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Fall 2011 | Brown University

The Mysterious Rise in Food Allergies


Speaking in Code: Is Metaphorical Language Preventing the Public from Understanding Genetics? Pandamonium: The Politics Behind a Giant The Battle Over Gene Ownership

Neuromorphic Implants for Dissecting the Hard Problem of Consciousness

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EXECUTIVE MANAGEMENT TEAM Chief Executive Officer Jennifer Ong Chief of Global Affairs Jacob Parzen Executive Editor-In-Chief Dhruba Banerjee Chief Production Officer Darwin Chan Executive Director, E-Publishing Zain Pasha Executive Director, Internal Affairs Jennifer Yang Executive Director, Science Policy Faisal Rahimi Chief Marketing Officer Manisha Kaura Chief Financial Officer Robert Qi Chief Operating Officer, Europe Francesca Day Chief Operating Officer, Australia Madeleine Chan Chief Operating Officer, North America Mridula Nadamuni Chief Operating Officer, Asia Chin You Chuen INTERNATIONAL STAFF Senior Literary Editors Titas Banerjee Jefferson Chen Michael Graw Vicky Phan Harrison Specht Linda Xia Senior Production Editors Luna Chen, Cornell Jasmine Chuang, Cornell Hyo Jin Jessica Lee, Cornell Andrew Kam, UChicago Ai Ming Chow, Melbourne Cassie Yeh, Berkeley Senior E-Publishing Editors Anna Collins Edgar Pal Jae Kwan Jang John Lee Rahul Kishore

BOARD OF DIRECTORS Chairman Kevin Hwang Vice Chairman Erwin Wang Secretary Melissa Matarese Alumni Chair Joel Gabre Finance Chair Kalil Abdullah Board Members Manisha Bhattacharya Julia Piper James Shepherd TRIPLE HELIX CHAPTERS North America Chapters Arizona State University Brown University Carnegie Mellon University Cornell University Georgetown University Georgia Institute of Technology The Harker School Harvard University John Hopkins University University of California, Berkeley University of California, San Diego University of Chicago Yale University Europe Chapters Cambridge University Asia Chapters National University of Singapore Australia Chapters University of Melbourne

THE TRIPLE HELIX


A global forum for science in society
The Triple Helix, Inc. is the worlds largest completely student-run organization dedicated to taking an interdisciplinary approach toward evaluating the true impact of historical and modern advances in science. Work with tomorrows leaders Our international operations unite talented undergraduates with a drive for excellence at over 25 top universities around the world. Imagine your readership Bring fresh perspectives and your own analysis to our academic journal, The Science in Society Review, which publishes International Features across all of our chapters. Reach our global audience The E-publishing division showcases the latest in scientific breakthroughs and policy developments through editorials and multimedia presentations. Catalyze change and shape the future Our new Science Policy Division will engage students, academic institutions, public leaders, and the community in discussion and debate about the most pressing and complex issues that face our world today.

All of the students involved in The Triple Helix understand that the fast pace of scientific innovation only further underscores the importance of examining the ethical, economic, social, and legal implications of new ideas and technologies only then can we completely understand how they will change our everyday lives, and perhaps even the norms of our society. Come join us!

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TABLE OF CONTENTS

09
4

Speaking in Code
Metaphorical language of genetics

Pandamonium

18

The politics behind a giant

20

Gene Ownership
Patents for genes

Cover Article
The Mysterious Rise in Food Allergies Natalie Christie, Cambridge

Local Articles
6 9 Synthia - Venters Synthetic Cell Speaking in Code: Is Metaphorical Language Preventing the Public from Understanding Genetics? Neuromorphic Implants for Dissecting the Hard Problem of Consciousness Genetic Engineering and Xenotransplantation: Future Considerations and Regulations Pandamonium: The Politics Behind a Giant The Battle Over Gene Ownership Moving Forward? The Role of the State Hospital in the Mental Healthcare Recovery Movement Ending the Free Ride: A Two-Tiered Organ Donation Paradigm Examining the Prospects of Deep Brain Stimulation as Mood Disorder Treatment Shubha Jindal Marissa Palmor

12 15

William Schweitzer Cody Simmons

18 20 22

Hayley Sparks Gaurie Tilak Kyle Wemple

25 28

David Winer

Adela Wu

International Features
31 Supermax Me? The Costs and Benefits of Long-Term Solidary Confinement Ethical Issues in Cancer Clinical Trials Mammography Screening Guidelines: A Lesson Yet to Be Learned Sex and Aging: The Social Stigma Big Change in Small Places: Development, Traditional Knowledge, and Womens Lives in the Peruvian Amazon

Doni Bloomfield, UChicago

34 37 40 42

Darius Borhan, UCSD

Sandra Hwang, Cornell

Jennifer Sung, UChicago Margo Elizabeth Johnson, ASU

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INSIDE TTH

Message from the Chapter President


Welcome Dear Reader! The start of another academic year brings with it a new issue of The Science in Society Review. This Fall, we are excited to present you with a diverse spectrum of articles. You will find our journal to be unique and interdisciplinary; our writers choose to investigate a wide variety of topics and address many different issues. The Triple Helix was originally founded in October 2004 as a single chapter at Cornell University. The Brown chapter began in 2005, and in the past six years TTH has grown into an international community of students, with chapters around the world. Collectively, we strive to study the connections between science, society and law. Or, more broadly, we examine the way in which sciences and humanities interact, overlap, and impact society at large. Our aim is to stimulate thoughtful discussion about these interactions and we hope the articles in following pages will encourage you to join this dialogue. As always, I would like to thank all students, faculty, and mentors who have played a role in the production of this journal. Moreover, we extend a special thanks to all members of our organization as well as to our readers. TTH would not exist without you. Please enjoy this edition! Sincerely, MariaLisa S.M. Itzoe President 2011-2012

STAFF AT BROWN 2011-2012 President MariaLisa Itzoe Editor-in-Chief Marissa Palmor Managing Editor Michael Spector Director of Science Policy Theresa Lii Assistant Directors 2012-2013 Lily Chan Shubha Jindal Director of Finance Connor Shinn Directors of Marketing Nicole Noronha Kyle Wemple Dan Meropol Website Manager Jovian Yu Faculty Review Board Andrea Megela Simmons Daniel Weinreich Gary Wessel Associate Editors Christine Bukowski Xianhan (Mary) Fei Chloe OConnell Rachel Occhiogrosso Mangala Patil Anthony Rivera Adam Shur Michael Spector Writers Shubha Jindal Marissa Palmor William Schweitzer Cody Simmons Hayley Sparks Gaurie Tilak Kyle Wemple David Winer Adela Wu

Message from the Outgoing Editor-in-Chief


The Triple Helixs Science in Society Review is an extremely unique publication: we are an international journal of science, society, and lawand we are entirely student-run. Our literary staff work throughout the semester, engaging in in-depth research and careful reviewing, to create what you hold in your hands now. The Brown chapter journal includes all the articles written at Brown during the cycle and a selection of articles from other chapters around the world. All of the articles in this journal have one element in common: they address issues that resonate for the writers and that lie at some intersection of science, society, and law. And thats where the similarities end. We have published pieces written in the style of traditional scientific articles and pieces in the style of personal essays; our authors have written about deep brain stimulation, panda conservation, and problems with how information about genetics and genetic technologies is distributed to the public; our authors have performed extensive research ranging from using the library and online journal articles to traveling to Thailand to investigate advances in HIV prevention. What you hold in your hands represents a semesters worth of writing, editing, rewriting, and reediting by students like you who were inspired by developments in the worlds of science, society, and law to go beyond the classroom and explore those developments independently. I hope that this issue of The Science in Society Review will likewise inspire you. Enjoy! Catherine McCarthy Editor-in-Chief 2010-2011

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INSIDE TTH

Message from the CEO


Over the next few months, you will notice that things are changing. The TTH International Executive Management Team has been worked tirelessly to prepare divisional guidelines that not only improve internal communication between international and chapter leadership but also increase global recognition of The Triple Helix brand. We have plans to continue our science policy collaborations, develop student research opportunities that provide skills for post-graduate careers, utilize our advisory and alumni networks, and expand internationally. Our new website http://www.thetriplehelix.org reflects a huge component of that change our new updated logo. With a more refreshing color scheme as well as revised circular shape, the logo has now become a better representation of our international nature while keeping us in line with the 3-D trend moving forward. Yet all of these changes would not have happened without your feedback, because no matter how much we talk, no matter how much we plan, you, the members and chapter leaders, are ultimately what drive us onward. So we urge you to continue connecting with us: Like our new Facebook Page, Tweet your experiences at #thetriplehelix1 and #tthepub, join our TTH LinkedIn group, and even hangout with us on Google +. As we come to a close on the first cycle of our leadership terms, come forward and develop new ideas that will push each issue to the next level. We look forward to working with and getting to know each one of you in the upcoming year. Try for something bold, something new, something truly unique, and TTH will be there with you every step of the way. Cheers, Jennifer Ong Chief Executive Officer

Message from the EEiC and CPO


Perhaps the most quintessential human--and indeed biological--necessity is food. But what if the body begins to reject the very nourishment it runs on? Could societal factors be responsible? In this Fall 2011 edition of the Science in Society Review, Natalie Christie discusses this growing problem in the cover story, The Mysterious Rise in Food Allergies. Greetings to the biannual journal of The Triple Helix! This is the first issue we have the privilege to share with you in our newly appointed positions. Whether you are a loyal reader or you have just picked this up for the first time, welcome to this unique forum for science, society, and law. You will find insightful and informative reporting from undergraduates across the world, united by a common understanding: We share the realization that science does not occur in a vacuum, but is integrated with the concerns and values of our time. In addition to the talented writers, the interdisciplinary goal of our organization is supported by leaders at both the individual chapter and international levels. Associate and managing editors at the chapter, and Senior Literary Editors comprising the International Editorial Board, work tirelessly to polish articles in preparation for publication. This journals layout and design is the work of production teams at Cornell, UChicago, and Berkeley. Laying out articles is important for incorporating written words into an aesthetically pleasing design that makes reading this issue an enjoyable experience. Design is an important aspect of our organization, as demonstrated by our new logo. The dynamic between the Literary and Production divisions cannot be understated, and it is this symbiotic relationship that makes this journal exist in your hands. Sincerely, Dhruba Banerjee and Darwin Chan Executive Editor-in-Chief and Chief Production Officer

2011, The Triple Helix, Inc. All rights reserved.

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The Mysterious Rise in Food Allergies


Natalie Christie

ood is vitally important for life, but for allergy sufferers it can be deadly. Over the last few decades, there has been a huge increase in the number of people with food allergies. Hospital admissions for children with food allergies have risen by five hundred percent since 1990, with 6-8 percent of children under the age of 3 affected [1]. An incredible forty percent of British children have suffered with an allergic problem at some stage of their life [2]. The question that we should be asking is: What is causing this dramatic increase? Simply put, an allergy is a hyperactive response from the sufferers immune system to certain substances foreign to our body. In the case of a food allergy, bodys immune system mistakes particular foods as harmful, producing antibodies known as IgEs which then try to attack the food, inciting the body to release chemicals. It is these chemicals which produce the symptoms of the allergy [3]. Food allergies encompass a whole range of symptoms, ranging from an itchy rash, sneezing, stomach cramps or mild fever to more severe symptoms such as asthma attacks, hypertension, and possible loss of consciousness. Common allergens include milk, eggs, peanuts, wheat or soya, but the list is extensive. Food allergies can have a severe impact on the life of the sufferer. For example, people with allergies have to keep a constant watch on everything they eat; one contaminated mouthful could have terrible consequences. This can cause eating to become very stressful, especially at social occasions and when eating out. Grocery shopping can take a long time, as every label must be read carefully. Labelling rules issued by the European Union have been extremely helpful for sufferers; it has now become a legal obligation to include 14 listed food allergens on all pre-packaged foods.

By far the most popular theory is the Hygiene Theory, formulated by epidemiologist David Strachan thirty years ago. Strachan first investigated hay fever, an allergic response to pollen. He discovered that increasing family size led to a reduced risk of developing hay fever and postulated that an increased exposure to infection during childhood prevented the development of the allergy. This theory has now been extended to include all allergies, especially food allergies, and nothing has, as of yet, been found to disprove it. Proponents of the theory believe that modern life has become too clean; children are exposed to so many cleaning detergents, antibacterial soaps and disinfectants that their immune systems cannot develop properly. The International Study of Asthma and Allergies in Childhood (ISAAC) has discovered that there are very few allergies in poorer countries the prevalence of allergies within a country increases in proportion to its affluence. It has been suggested that this is because children from poorer countries do not have access to such a standard of hygiene and thus live in dirtier environments [5]. Even though many scientists and medical doctors favour this hygiene theory, others are apprehensive as much of the theory is speculation at present. Maybe the increase in food allergies is the price that society has to pay for being free of some life-threatening diseases.
Reproduced from [10]

Food allergies can have a severe impact on the life of the sufferer

However, the most important thing now is to find out why there has been such an increase in the number of allergy sufferers [4]. There has been a vast amount of research into why the allergy incidence has increased, and numerous correlations between allergies and other factors have been found. Although several theories are rather convincing and have a lot of support in the academic and medical world, a single decisive account has not emerged yet. The three most plausible theories are the hygiene theory, leaky gut syndrome and the vitamin D theory.

Secondly, there has been link discovered between childhood obesity and food allergies. Results from the National Health and Nutrition Examination Survey 2005-2006 (USA) show that with a rise in childhood obesity there has also been an increase in childhood food allergies [6]. Investigations of IgE responses have shown that children of average weight had no increase in IgE antibodies when tested with allergens, but there was a huge increase found in obese children. A further study by scientists at GlaxoSmithKline (a pharmaceutical company)

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sought to find the reason of the correlation [7]. They suggest that bad diets high in sugar and fat whilst low in fibre disturb the gut, causing dysbiosis (an unhealthy gut environment), as well as obesity. A disturbed gut environment is thought to cause a leaky gut, wherein cells in the small intestine are weakened and structurally damaged. This means that food antigens, instead of entering these cells, can sneak past them and into the blood stream, setting off allergic reactions. As well as causing immune reactions, a leaky gut would increase the insulin resistance of body cells, thus promoting poor glucose control and, eventually, obesity. A healthy diet could, in many cases, trigger a decrease in food allergies and obesity. Alternatively, there are many other things that might cause a leaky gut. Infectious agents, such as yeasts, pathogenic bacteria like salmonella, or an overgrowth of bacteria can increase intestinal permeability, regardless of ones diet. Parasitic infections have become more frequent with imported foods and greater foreign travel, but they have also risen in close association with heavier use of antibiotics. Antibiotics kill off friendly bacteria within the gut, leaving it to be colonised by detrimental yeast and bacteria. Overuse of over-the-counter drugs, such as paracetamol, aspirin, and ibuprofen have also been found to increase gut permeability, which eventually could lead to food allergies [8]. Nevertheless, the idea of the leaky gut syndrome remains an area of slight controversy itself. The site of much research at present, the condition is felt by many scientists to fall somewhere between conventional and alternative medicine. Though regularly diagnosed by alterative practitioners, it is still not formally recognised as a medical condition. If it were assumed that leaky gut syndrome were a true medical disorder, the question as to why the number of food allergies has increased so much would be answered. Recently, there has been a huge rise in the use of paracetamol and other NSAID drugs, as well as antibiotics. Many children do not have healthy diets and eat too many processed foods high in additives and sugar. Babies are born with a higher intestinal permeability than those of adults. If a baby is introduced to cows milk and food solids too early on, then the milk will pass through into the blood stream, causing the production of IgE antibodies. This leads to a dairy allergy. If the leaky gut syndrome was found to be the answer, then it would solve the problem of increasing food allergies simply. Unfortunately, this explanation does not address all the issues. There is still yet another possible solution: vitamin D deficiency. Researchers at the Massachusetts General Hospital in Boston have found a link between food allergies and lack of vitamin D [9]. Over a study of 1002 patients, scientists found that winter babies are more prone to food allergies.
References
1. National Institute For Health and Clinical Excellence (NICE) 2. Dr A Fox. http://www.adamfox.co.uk/Expertise.html 3. British Allergy Foundation www.allergyuk.org 4. Food Standards Agency http://www.food.gov.uk/safereating/allergyintol/label/ 5. Ahuja A. Is our zeal for cleanliness making us ill? The Times 2008 May 5 6. Visness C et al. Association of obesity with IgE levels and allergy symptoms in children and adolescents: Results from the National Health and Nutrition Examination Survey 2005-2006. The Journal of Allergy and Clinical Immunology, Pages 1163-1169.e4, May 2009 7. Rong J et al. Adipose Mitochondrial Biogenesis Is Suppressed in db/db and HighFat DietFed Mice and Improved by Rosiglitazone. Diabetes Journal 2007. 8. Gallard L M.D Leaky gut syndrome, breaking the vicious cycle. Foundation for integrated medicine http://www.mdheal.org/leakygut.htm 9. M. F. Vassallo et el. Potential Mechanisms For The Hypothesized Link Between Sunshine, Vitamin D, and Food Allergy In Children. The Journal of Allergy and Clinical Immunology Volume 126, Issue 2 , Pages 217-222, August 2010 10. CC-BY-NC, Wellcome Images, N0032617. URL: http://images.wellcome.ac.uk 11. CC-BY-NC, Wellcome Images, C0022910. URL: http://images.wellcome.ac.uk

Vitamin D helps the body to fight infections and suppresses the bodys allergy cells, contributing to greater tolerance for allergens. A lack of vitamin D would conversely lead to an increase in allergy occurrences. It is possible that this coincides with the rise in awareness of skin cancer over the past twenty years and the subsequently increased use of sun creams on children, which in turn could lead to a vitamin D deficiency. However, although plausible, one would think that vitamin D deficiency would only account for a small number of food

Reproduced from [11]

allergies, rather than the huge amount actually seen. In conclusion, there is no final answer as to why there has been such an increase in food allergies. The research is still going on, and several plausible explanations and theories exist that could be the answer. However, we need more investigation especially as a large proportion of work falls in the controversial area between alternative and conventional medicine. Many scientists have not accepted the Leak Gut Syndrome, although the evidence is building up for it, and if it was found to be correct, it would answer many problems. At present, scientists are focusing on the bacteria found in the gut, working on the Human Microbiome Project to map all of the bacteria found within the body, which may provide some answers, and maybe help decrease the prevalence of food allergies in the future. Natalie Christie is a third year student at St Catharines College studying History and Philosophy of Science.

2011, The Triple Helix, Inc. All rights reserved.

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Synthia: Venters Synthetic Cell


Shubha Jindal

ith the creation of a synthetic cell by Craig Venters team in May 2010, we have taken technology beyond our wildest dreams. Designing a computeran inanimate machinethat does all our work is one thing; manipulating a live cell to work according to our wishes is another. Since May of 2010, the headlines of numerous research journals such as Science and Cell have focused on Craig Venter and his teams ground-breaking accomplishment of designing Synthia, a synthetic cell that holds immense potential for future research in synthetic biology, genetics, and pharmaceuticals. His research is important because it shows promise in developing vaccines and drugs to cure diseases, creating biofuels and environmental clean-up agents, and helping researchers to gain a better understanding of how life forms operate. However, his lab faced a variety of hurdles in creating the synthetic cell and now faces several regulatory and ethical issues regarding the control of this technology, such as concerns about biosafety and bioterrorism. The scientific community has heralded this research as the first successful construction of a cell that performs all its functions according to the instructions of a synthetic genome chemically prepared in the laboratory. However, certain factions of the non-scientific community fear that humans are playing God by creating life. The Procedure Dr. Hamilton Smith, one member of Venters synthetic cell team, sums up the research as the successful development of new tools and techniques to dissect the genetic instruction set of a bacterial cell to see and understand how it really works [1]. Dr. Smiths statement is an indication that the creation of a synthetic cell is a stepping-stone in exploring how life functions. To make the cell we now know as Synthia, researchers at the J. Craig Venter Institute [JCVI] designed, synthesized, and assembled a 1.08-mega-base pair Mycoplasma mycoides JCVI-syn1.0 genome starting from digitized genome sequence information and transplanting it into a M. capricolum

recipient cell. This recipient cell replicated to create new M. mycoides cells controlled only by the synthetic chromosome [1]. Venters team selected the parasitic bacterium M. mycoides for two primary reasons: it grows quickly, and it consists of a relatively small genome. The selection of these two properties was instrumental in the success of the research as it made the bacterium easier to work with. Impediments in Creating Synthia The Venter team had to overcome several hurdles in transplanting and expressing a chemically synthesized chromosome in a recipient cell. First, Venters lab needed to improve methods for handling and manipulating intact chromosomes [1]. They also needed to synthesize a circular plasmid consisting of a million base pairs, which was over 20 times more than any that had been synthesized before [2]. Most chemical synthesis techniques stop working at a few thousand DNA letters [3]. This means that the researchers Reproduced From [14] could not synthesize a whole genome at oncethey would have to do it in parts. Venter and his colleagues eventually solved this problem by putting smaller fragments of synthesized DNA into bacterial cells first, where they assembled into large fragments, and then into yeast cells that had the machinery to stitch those fragments together. These researchers also needed to learn how to transplant these genomes into a recipient bacterium to establish a cell that not only functioned, but was also controlled entirely by a synthetic genome. Most importantly, they needed to know if they could transfer a working chromosome from one species of bacteria into another. After clearing these problems, the last hurdle was to make an exact copy of the M. mycoides genome in the lab and transfer that synthetic genome into M. capricolum [3]. Positive Implications Venters research was particularly groundbreaking because the synthetic genome was not physically derived in any way

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from preexisting genetic material and showed that it could be synthesized in the laboratory. Standard genetic engineering allows splicing of short synthetic sequences into existing, natural DNA sequences, but Venters Synthia genome was created from scratch. Venters team used a DNA synthesizer to piece together the A, G, C, and T bases to form novel building blocks, which they then stitched together into a single sequence [4]. definition of life. Scientists at the JCVI envision that the knowledge gained by constructing this first self-replicating synthetic cell, coupled with decreasing costs for DNA synthesis, will give rise to wider use of this powerful technology [5]. Synthetic bacteria with special genes can be constructed for use in the medical field to cure diseases like cancer and genetic birth defects. Synthetic bacteria can also be used as a scientific tool to create bacteria that synthesize new amino acids and to see how these bacteria evolve compared with bacteria that produce the usual suite of amino acids [7]. Another possibility for this technology is the creation of bacteria that digest oil from leaks and spills or that consume cholesterol and other potentially harmful substances in our bodies [8]. Negative Implications As with many discoveries of this magnitude, however, Venters cell has generated many concerns despite the potential benefits it appears to provide. A synthetic cell raises questions about biosafety, such as whether this technology could be used in bioterrorism to create a harmful pathogen as a biological weapon [9]. Even if measures are taken to prevent bioterrorism, small mistakes in labs working with synthetic bacteria could lead to the escape of these microbes into the environment where they could harm the ecosystem and the human population [10]. These ethical considerations also relate to the possibility of synthetic microbes mutating, converting a harmless bacterium into a pathogenic one. Professor Julian Savulescu, an Oxford University ethicist, is also concerned about whether we are playing God. Venter himself maintains that he has created not life but a synthetic cell, the difference being that he has used a pre-existing cell and has only inserted a synthetic chromosome into it [7]. Since the cell functions according to the inserted genome and the rules of synthetic life, it is synthetic [11].

Venter states that Synthia is the first synthetic cell whose genome is totally derived from a synthetic chromosome

The synthetic cell is proof of the principle that genomes can be designed in the computer, synthesized in the laboratory, and transplanted into recipient cells to produce a new selfreplicating cell controlled exclusively by the synthetic genome. It is not only the end product that is important, however; the tools and laboratory techniques that were developed as part of this research provide a means to piece apart a bacterial cells genetic information in order to understand its function [5]. Dr. Daniel Gibson, who played a critical role in this project, realizes this when he talks about working on their ultimate objective of synthesizing a minimal cell [1]. Such a cell would contain only the genes that are necessary to sustain life in its simplest form [5]. If researchers were able to create a minimal cell, it will help them better understand how cells function. As a cell is the basic and most fundamental unit of life, this could lead to an understanding of how life itself functions. Venter and his team have some preliminary ideas on how to achieve the goal of a minimal cell. The current proposed method is to take out small sequences from the synthetic genome and utilize their current transplantation methods. Small genomic sequences will be continually removed until the deletion of genes starts disrupting the cell and the genome is as small as possible. It is proposed that this minimal cell would be a platform to analyze the function of every essential gene in a cell [5]. Venter states that Synthia is the first synthetic cell whose genome is totally derived from a synthetic chromosome. He asserts that this is an important stepnot only scientifically, but also philosophicallyand claims that it has changed [his] views of the definitions of life and how life works [6]. Venters team created new life out of already existing life in the form of the synthetic DNA. One begins to wonder where to draw the line between creating life and creating artificial life. The use of a naturally occurring microbe as a host could constitute creating artificial life. However, the instructions of the cell are contained in its DNA, and this was synthetically created. In this way, Venters research challenges our
2011, The Triple Helix, Inc. All rights reserved.

Synthetic bacteria can also be used as a scientific tool to create bacteria that synthesize Reproduced From [14]. new amino acids and to see how these bacteria evolve, compared with bacteria that produce the usual suite of amino acids
John Sulston, a Nobel Laureate, has more practical concerns about the technology used in creating Synthia. He argues that Venter will obtain a monopoly on a range of genetic engineering techniques, which will restrict geneticists across the world from freely conducting their experiments. Others
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in the scientific community regard Venters research as less than promising because of the number of years it will take to be able to design new organisms from scratch. Moreover, they argue that conventional genetic engineering techniques have already enabled them to make progress in making biofuels and vaccines and that Venters research is therefore not really efficient in large-scale research [12]. Concerns regarding the synthetic cell are legitimate as any powerful technology has the potential to cause more harm than provide benefits. For example, terrorists could use the synthetic cell as a weapon while scientists could use it to create oxygen-evolving bacteria to explore the possibility of life on other planets. Conclusion Currently, Venter is collaborating with Exxon Mobil to produce biofuels from algae [7]. Producing biodiesel and other biofuels from algae is widely regarded as the most promising basis for large-scale biofuel production due to its resilient and fast-growing nature [13]. In the future, designer bacteria can help in the creation of vaccines for currently incurable diseases such as Parkinsons disease. The construction of synthetic bacteria that take in carbon dioxide can alleviate pollution problems. This shows that the synthetic cell has great potential in the imminent future as it will allow humans to manipulate synthetic organisms according to their needs. The benefits are far-reaching although more research is required to tap into the unexplored advantages of this technology. Shubha Jindal is a Biology concentrator at Brown University interested in genetics research and is currently modeling human neurodegenerative diseases in Drosophila. Shubha also enjoys reading about new scientific breakthroughs, especially those at the level of molecular biology.
Reproduced From [15]

References
1. Gibson DG, Glass JI, Venter JC. et al., Creation of a Bacterial Cell Controlled by a Chemically Synthesized Genome, Science [serial on the Internet]. 20 May, 2010 [cited 2011 Mar 15]; 329. Available from: http://www.sciencemag.org/content/329/5987/52. full 2. Chow C. Scientific Clearing House: Venters synthetic cell. [homepage on the Internet]. 2010 [cited 2011 Mar 15]. Available from: http://sciencehouse.wordpress. com/2010/05/25/venters-synthetic-cell/ 3. Palca J. Scientists Reach Milestone On Way To Artificial Life, [homepage on the Internet]. 2010 [cited 2011 Mar 15]. Available from: http://www.npr.org/templates/ story/story.php?storyId=127010591 4. Amos M. Team Venters synthetic cell, explained, [homepage on the Internet]. 2010 [cited 2011 Mar 15]. Available from: http://martynamos.blogspot.com/2010/05/teamventers-synthetic-cell-explained.html 5. J. Craig Venter Institute. First Self-Replicating Synthetic Bacterial Cell: First Self-Replicating, Synthetic Bacterial Cell Constructed by J. Craig Venter Institute Researchers. [homepage on the Internet]. 2010 [cited 2011 Mar 15]. Available from: http://www.jcvi.org/cms/press/press-releases/full-text/article/first-self-replicatingsynthetic-bacterial-cell-constructed-by-j-craig-venter-institute-researcher/ 6. Caroll J. Venter team births worlds first synthetic cell. Fierce Biotech [serial on the Internet]. 2010 [cited 2011 Mar 15]. Available from: http://www.fiercebiotech.com/ story/venter-team-births-worlds-first-synthetic-cell/2010-05-21 7. Callaway E. Immaculate creation: birth of the first synthetic cell, NewScientist [serial on the Internet]. 2010 [cited 2011 Mar 15]. Available from: http://www. newscientist.com/article/dn18942-immaculate-creation-birth-of-the-first-syntheticcell.html 8. Samuel G. The perils of creating synthetic life. BioNews [serial on the Internet]. 2010 [cited 2011 Mar 15].;559 Available from: http://www.bionews.org.uk/ page_61626.asp 9. Macrae F. Scientist accused of playing God after creating artificial life by making designer microbe from scratch - but could it wipe out humanity? MailOnline [homepage on the Internet]. 2010 [cited 2011 Mar 15]. Available from: http://www. dailymail.co.uk/sciencetech/article-1279988/Artificial-life-created-Craig-Venter-wipe-humanity.html 10. Ward L. Craig Venter Boots up First Synthetic Cell. Popular Mechanics [homepage on the Internet]. 2010 [cited 2011 Mar 15]. Available from: http://www. popularmechanics.com/science/health/breakthroughs/synthetic-cell-breakthrough 11. Kaebnick G. Is the Synthetic Cell about Life?: A bioethicist explores the soul of Venters new life form and of his experiment, The Scientist [serial on the Internet]. 2010 [cited 2011 Mar 15].;24[7] Available from: http://www.the-scientist.com/article/ display/57523/ 12. Wade N. Researchers Say They Created a Synthetic Cell. The New York Times [homepage on the Internet]. 2010 [cited 2011 Mar 29]. Available from: http://www. nytimes.com/2010/05/21/science/21cell.html 13. Garrett J. First Synthetic Cell Holds Promise for Biodiesel and Green Heating Oil. [homepage on the Internet]. 2010 [cited 2011 Mar 29]. Available from: http://www. heatingoil.com/blog/first-synthetic-cell-holds-promise-for-biodiesel-and-greenheating-oil0523/ 14. Dillow C. Venter Institutes Synthetic Cell Genome Contains Hidden Messages. [homepage on the Internet]. 2010 [cited 2011 Apr 27]. Available from: http://www. popsci.com/science/article/2010-05/venter-institutes-synthetic-cell-genome-containshidden-messages-watermarks 15. Macrae F. Scientist accused of playing God after creating artificial life by making designer microbe from scratch - but could it wipe out humanity? Mail Online [homepage on the Internet]. 2010 [cited 2011 Apr 27]. Available from: http://www. dailymail.co.uk/sciencetech/article-1279988/Artificial-life-created-Craig-Venter-wipe-humanity.html

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Speaking in Code: Is Metaphorical Language Preventing the Public from Understanding Genetics?
Marissa Palmor

or over a decade, it has been widely accepted that we are living in the age of the genome. Since the initiation of the Human Genome Project, genetics and genetic technologies have been eliciting excitement and fervent debate everywhere from classrooms to headlines and dinner tables alike. However, it is evident from this discourse that the public fails to understand many of these concepts beyond the simplistic and metaphorical explanations that have become essential to science curricula and journalism. As a result of not understanding the significance of the genomefrom single gene units to their multifaceted interactionsmembers of the public fail
Reproduced From [6]

to understand the technologies available to them as patients and consumers. Yet, public expectations for these technologies are rising, along with the stakes. With new technologies such as direct-to-consumer genome screening and prenatal testing entering markets around the country, the public has a responsibility to make informed decisions regarding the use and regulation of these products that could greatly impact their lives. From the media to educational systems, the public must understand this relatively young field of research to have a say in the regulation and development of todays many burgeoning genetic technologies. The Roots of the Metaphor It was not until James Watson and Francis Crick published A Structure for Deoxyribose Nucleic Acid [1], the first paper to describe the double helix structure of DNA, that widespread genetic metaphors truly entered popular dialogue. Along with this first publication came the illustration of DNAs ATCG base system acting as a master molecule or code [2], one metaphor that has evolved into the many others still in use today. For decades, one could not discuss the genome without hearing it described as an instruction book, the book of life, a blueprint of the human race, and so on. Each of these exact phrases, in fact, were heard on the day that President Bill Clinton, Prime Minister Tony Blair, Dr. Francis S. Collins, and Dr. J. Craig Venter came together in the East Room of the White House to announce the first survey of the completion of the Human Genome Project [HGP] [3]. In one public announcement, all speakers but Venter used one of these metaphors to convey the importance of this scientific work. Beyond likening the genome to a great book that may be read off just as clearly and linearly as one could read the words on this page, several connections were drawn to the image of a holy book of life, describing this instruction book as previously known only to God, saying that today we are learning the language in which God created life [3]. Though these metaphors may have been effective vehicles for politicians and officials to generate excitement and discourse among the public, they completely fail to convey the millions of dollars and decades of laborious research that brought the HGP to this point. Furthermore, these metaphors also provided, and even encouraged, a gross oversimplification of the complicated interactions of genetics, epigenetics, and environmental factors that come together to create life as it is observed and understood by the nonscientific public.

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Teaching in Metaphor Though these religious metaphors seem to have quieted down in the public media in recent years, other reductionist metaphoric language derived from these first misconceptions reigns on in todays classrooms. Though more than 80 [percent] of middle and high school science standards adopted since 2003 include terminology on the Human Genome Project cloningand/or other biotechnology terminology that did not exist in previous versions of the standards [4], there is ample evidence that efforts to bring genetics into the classroom are failing to displace previous misinformed conclusions about failure of teachers to introduce interactive lessons that encourage a real examination of genetics principles, has hampered the ability of students to communicate about genetics in the classroom as well as in public. Doctors and Genomes As disappointing as it is to hear that schoolrooms are failing to adequately educate youth about genetics, it is even more disheartening that the American medical communitys knowledge is falling behind the latest genetic developments. Executive Vice President, CEO, and MD Michael Maves of the American Medical Association recently wrote to the Food and Drug Administration, the number of genetic tests available directly to consumers has proliferated rapidly, and several studies have reported that physicians find it difficult to keep up with the pace of genetic technology [5]. Written on behalf of the American Medical Association in response to recent public meetings regarding the possible regulations for directto-consumer genome screening, this letter simultaneously requested that doctors be solely responsible for handling genome screenings and consultations. As Mavess letter indicates, even the medical officials to whom the public turns as agents of science are not able to effectively communicate the implications and meaning of genetic technologies and screening to their patients. If doctors are unable to effectively communicate with their patients about the significance of and appropriate responses to genomic screens, that task may be left in the hands of for-profit companies that may be inclined to skew that information to their advantagepresenting the information

For decades, one could not discuss the genome without hearing it described as an instruction book, the book of life, a blueprint of the human race
genetic science. A study conducted by the American Society of Human Genetics [ASHG] in 2008 analyzing the results of a high school essay contest regarding the techniques and ethics of modern genetic science concluded that misconceptions derived from the media or over-simplified teaching goals are not effectively corrected in high school classrooms, in spite of well-intended statewide standards for science curricula and the teachers implementing them [4]. Five hundred essays submitted to this contest were analyzed in depth for these misconceptions, and they demonstrated such examples in areas ranging from genetic technology to patterns of inheritance; the deterministic nature of genes and the genetic basis of disease; and the nature of genetic materials, research, and reproductive technology. Although this study intentionally separated these categories, it is clear that each of these elements is integral to effective communication regarding genetics and the genetic technologies making headlines today. Many of the essays were in ways that reflect the strength of the popular genome as a book metaphor, suggesting that the content of genetic information could be simply read off with direct meanings and consequences. This is due to the popular one gene, one phenotype paradigm that is derived from the patterns of Mendelian genetics, the simplest of genetics models that also receives the most attention in classrooms. Rather than emphasize the complex non-Mendelian and polygenic models of inheritance that are more frequently at work in phenotypes of interest, most state standards [seventeen of twenty] require only the explanation of this clear model that most directly feeds into one gene, one phenotype assumptions about genetics [4]. Though it may seem a great step forward that genetics lessons have entered the classroom en masse, the oversimplification of much of this teaching, as well as the 10 THE TRIPLE HELIX Fall 2011
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misconceptions derived from the media or oversimplified teaching goals are not effectively corrected in high school classrooms, in spite of well-intended statewide standards for Reproduced From [14]. science curricula and the teachers implementing them

as certain to increase hype and dramatize personal anecdotes. The debate continues as to whether returning screening results with detailed explanations of the genetic data and its potential consequences, or lack thereof, is enough to ensure appropriate interpretation of this information. This concern is well-founded, since much of media coverage regarding the genes reported in such screens follow the gene for X modelsaying that a gene for this or that downstream phenotype has been discovered by new research. While screening companies like 23andMe do
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look for single nucleotide polymorphisms [SNPs] that seem to hold direct relationships to diseases, in reality, these genes are just one of hundreds that contribute to disease and other characteristics of interest to the public. For this reason, data needs to be returned with detailed explanations of what it may and may not suggest, without allowing for any quick conclusions. As such, the question still stands whether, like the metaphorical analogy of the human genome to a book, people reading their own reports will seek prescriptions, answers, and categorizations, or if they will take the time to fully comprehend the nuanced explanations and uncertainties involved in interpreting this raw data. Changing Metaphors, Shifting Paradigms As debates about genetic technologies continue, and as the public pushes to delve further into headline-making scientific breakthroughs, it is time to critically analyze the way that this information is understood and propagated. Rather than accept the current metaphorical language and consequent misconceptions of genetics in popular discourse, real advancements must be made to increase the accuracy of such discoursespreading awareness and promoting the exchange of unaltered facts. To do so, policymakers, educators, doctors, researchers, and journalists need to make effective changes in their fields to spread scientific knowledge earlier and further. By bringing an awareness of actual genetic science to classrooms as early as possible, and ensuring that the popular media do not use faulty metaphors as a linguistic crutch or a marketing tool, those who publicize and regulate science could give the American public the means to better understand this developing field. The medical community must in turn strive to stay abreast of technological advancements and the subsequent concerns and needs of their patients, and the researchers providing this data must be held from exaggerating or making inaccessible the results of their work. With enough collaboration and cooperation, the public could easily be made more aware of this complex yet critical field. A real understanding of genetics is indispensible for the publics acceptance and effective utilization of genetic technologies in an informed and appropriate manner as these technologies continue to fascinate and affect us. Marissa Palmor 12 is a Human Biology concentrator with an interest in bioethics and reproductive health. She may be reached at Marissa_Palmor@brown.edu.

Reproduced From [7]

References
1. Watson JD and Crick FHC, A Structure for Deoxyribose Nucleic Acid. Nature 1953; 171:737-738. 2. Hedgecoe A, Transforming genes: metaphors of information in modern genetics. Science as Culture 1999; 8:209-228. 3. Office of the Press Secretary of the White House. Remarks by the President, Prime Minister Tony Blair of England [via Satellite], Dr. Francis Collins, Director of the National Human Genome Research Institute, and Dr. Craig Venter, President and Chief Scientific Officer, Celera Genomics Corporation, on the Completion of the First Survey of the Entire Human Genome Project [press release]. Washington, D.C: The White House; 2000 June 26.

4. Shaw KM, Van Horne K, Zhang H, Boughman J. Essay Contest Reveals Misconceptions of High School Students in Genetics Content. Genetics 2008; 11571168 5. Maves MD. Re: Molecular and Clinical Genetics Panel of the Medical Devices Advisory Committee, Notice of Meeting [Docket No. FDA-2011-N-0066] [letter]. Chicago, IL; 2011 February 23. 6. Original Watson and Crick Model Picture [Image on the Internet]. 2007 [cited 10 May 2011]. Available from: http://www.farooqhussain.org/projects/ dnamodelreconstruction. 7. 23andMe Genome-Testing Kits Picture [Image on the Internet]. 2010 [cited 10 May 2011]. Available from: http://www.flickr.com/photos/nosha/4668325959/.

2011, The Triple Helix, Inc. All rights reserved.

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Neuromorphic Implants for Dissecting the Hard Problem of Consciousness


William S. Schweitzer
What is the Hard Problem of Consciousness? eople dont agree about what consciousness is. Notions of self-awareness or meta-cognition as criteria for consciousness emerge in some philosophical, cognitive science, and machine-engineering scholarship. Consciousness may one day join attention, memory, and perception as something we explain in terms of neural connections and firing patterns. Hypothetically, a robot could copy these to implement all of the cognitive operations that make us think of ourselves as selves and even to convince people it is an intelligent being. Still, we wouldnt be able to tell whether such a robot really experiences. Reproduced From [20] A more direct definition of consciousness is any minimal trace of subjective experience, or qualia. A quale is, for example, the greenness our mind imposes on light of a certain wavelength hitting the retina. Nothing outside ones head is intrinsically green, or savory, or shrill, or aromatic. Pupil dilations, knee-jerk reflexes, and salivation are automatic responses to certain stimuli, but they are not phenomenological and therefore not qualia. We may consider qualia, these phenomenological building blocks, and the interactions between them identical with experience, and with consciousness. Understanding how experience exists and functions is commonly known as the Hard Problem of consciousness [1]. There is a growing interdisciplinary scientific interest in this ancient mystery. At the annual Towards a Science of Consciousness conference, one can encounter philosophers, psychologists, cognitive scientists, neuroscientists, biologists, quantum physicists, and even spiritual writers. Along with the journals Consciousness and Cognition and Journal of Consciousness, this conference includes among its chief goals the furthering of understanding of what makes experience happen. of neurons [2,3] to electromagnetic fields that emerge from and unite organic information-processing architecture [4,5,6] to special arrangements of pure causal information [7,8]. Once the NCCs are isolated, a second question remains as to how conscious states relate to physical states. One popular account of consciousness treats experience as a fundamental entity of the world, alongside matter, energy, and space-time [7]. By casting experience and the physical world as dual facets of the same thinginformationthis view presents organizational invariance, the panpsychic claim that any object that conveys causal information shares an identity with some minute trace of experience [7]. According to this viewpoint, two brains with identical connectivity processing the same thing would have identical qualia. It doesnt matter whether one is made of silicon, or is the size of a mainframe computer, or relies on a central processing unit; as long as it processes the same essential information as a biological brain, it would have the same experience. If we can establish fundamental principles about the relationship between the shared physical world and private phenomenology, we are then able to test a third set of more elaborate theories. Perhaps the most mathematical and empirically testable theory of how and why a quale can result from causal information is Integrated Information Theory [IIT], which builds on organizational invariance [8]. This theory assigns a value, [phi], to the information a system can realize above and beyond its parts. Although a digital screen may convey complex information, it has a very small because it performs no discrimination between any causal signals beyond the OFF/ ON state of its component diodes. Our minds, however, can discriminate between countless input states composed of integrated information from each sensenot just the two inputs, ON or OFF [8]. According to this theory, any quale can be graphed as a geometric shape carved out by causally related points, each marking a set of probabilities, each probability corresponding to a certain information state in the brain [8]. Why the Hard Problem Is Not Easy The problem is these hard problems are hard because we

Unpacking the Hard Problem The Hard Problem can be broken down into several smaller problems. The primary question is, What are the minimal events and structures [the neural correlates of consciousness, or NCC] that must be present for consciousness to happen? The necessary correlates, according to competing accounts, range from patterns of quantum leaps within the microtubules 12 THE TRIPLE HELIX Fall 2011
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can only observe our own experience, and no one elses. Experience is inherently private [9]. As Nagel argued, we could exhaustively visualize the functional processes by which a bat uses echolocation to perceive its surroundingsthis is public information. But without any echolocation of our own, we cannot possibly imagine what the experience is like for a bat. An explanatory gap persists between the two ways of knowing [9]. In fact, you cant really know whether a bat, or Turing machine, or anyone other than yourself, is conscious at all [10]. Of course, we assume awake and dreaming humans are conscious. An advantage of this assumption is that it lets us begin to correlate some brain states with experience [unlike machines, we trust they really are conscious] and others with its absence. Whether we correlate changes in brain activity with the mind-altering effects of LSD or the spawning of two consciousnesses within a split-brain patient [1], studies on humans at least allow for third-person [but not direct] access to information from a subjects private experience. We are less disposed to assume a Turing machine is conscious. Still, an advantage of working with machines is that we design them ourselves and can take them apart to isolate exactly what interests us. Neuroimaging cannot nearly catch such detail in living patients. Even if it could, one cannot fiddle with real brains the way one can with machinery. Human studies allow access to private information but do not allow much control over the neural circuitry; machine studies allow for this control but can never satisfy the need for private information. All components of the hard problem are caught between machine and human studies in that they require both private information and control of the physical components to isolate the neural correlates of consciousness. Neuromorphic Implants: A Plausible Solution A methodology combining the best of both worlds may be on the horizon. In the last decade, a spate of ambitious projects have been launched around the globe to artificially imitate brains [11]. DARPAs SyNAPSE Program aims to develop electronic neuromorphic machine technology that scales to biological levels [12]. DARPA started this initiative in the hope that directly mimicking neural structures in hardware would afford computational advantages over traditional computer chips. And so it has: Kwabena Boahens Brains in Silicon program at Stanford is harnessing the brains parallel processing architecture to rival the Blue Gene supercomputers serial-processing performance with a million times less energy [13]. The group is one of several contributors to silicon replicas of retinas, whose increasing energy and size efficiency is pav-

Reproduced From [14].

Reproduced From [21]

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ing the way for implantation in the blind [14]. Besides this, the group is starting on blueprints for neuromorphic replicas of the cochlea, the cerebellum, the basal ganglia, part of the thalamus, and eventually the cortex [13]. Other important aspects of neural computation are being selected and copied as well. The Neuromorphics Laboratory at Boston University aims to solve the prohibitive energy demands of combining information from separate memory and processing centers in digital computer architecture. Their answer to this is the memristor, a kind of transistor with the unique sical conditioning of motor response circuitry to restore motor learning in aged rats [16, 17]. Finally, large-scale simulations of the mammalian brain on computers push the limit on what can be copied on software, if not hardware. These include the Blue Brain Project, the IBM Blue Gene supercomputers cat brain simulation [11], and the Integrate and Fire Array Transceiver at Johns Hopkins [11]. Neuromorphic engineers are still working hard just to build replicas of the most peripheral neural circuits that can actually replace damaged tissue. However, it is not inconceivable that increasingly integrative partshigh- partsof the brain may follow suit [13, 18]. The march of computational neuroscience and neuromorphic engineering points toward a medical future in which a silicon chip helps an aging or Alzheimers patient compensate for memory loss or fills the literal and figurative holes in the quality of life of a stroke victim. Such an implant would be unprecedented because it would give trusted, human consciousness private access to hardware we engineered ourselves. If a neuromorphic implant can restore experience in some way, its designers will have virtually isolated the neural correlates of consciousness. If not, a failure still provides useful feedback. Whats more, an implant that produces the exact same experience when it conveys the same information would support the principle of organizational invariance; if the experience did not correlate with the information, one could ask what other physical factors affect experience. Finally, the relationship between phenomenology and information on an implant may support or contradict IIT theory and its competitors. As a neuroscience major with an interest in biomedical engineering, William finds the intersection between the brain and philosophy especially interesting, which is what led him to write about the mind body problem, and how technology can help.

By casting experience and the physical world as dual facets of the same thing informationthis view presents organizational invariance, the panpsychic claim that any object that conveys causal information shares an identity with some minute trace of experience

property of retaining information about its own stimulation history in its resistive state, somewhat like a synapse [15]. Another group aims to develop a rehabilitative nanochip, or ReNaChip, that can interface with the brain and bridge processing gaps left by aging, or perhaps stroke. The group is currently working on a chip that copies the cerebellums clasRefernces
1. Pinker S. The Brain: The Mystery of Consciousness. Time Magazine [serial online]. 2007 Jan 19 [Cited 2011 Mar 16]; Available from http://www.time.com/time/ magazine/article/0,9171,1580394,00.html 2. Hameroff SR, Penrose R. Conscious events as orchestrated space-time selections. Journal of Consciousness Studies. 1996; 3 [1]: 36-53. 3. Hameroff S. The conscious pilotdendritic synchrony moves through the brain to mediate consciousness. J Biol Phys. 2010 April 2;3:71-93. 4. Pockett S. Initiation of Intentional Actions and the Electromagnetic Field Theory of Consciousness. Humana Mente. 2011 Jan; 15:159-175. 5. McFadden, J. The Hard Problem Made Easy? Journal of Consciousness Studies. 2002; 9[8]:45-60. 6. Lorenz S, Ames H, Versace M. Consciousness and Neuromorphic Chips: A Case for Embodiment. Paper presented at: Interdisciplinary graduate conference on consciousness; April 2010. Available at http://www.neurdon.com/2010/12/07/ moneta_and_the_c_word/ 7. Chalmers D. Facing Up to the Problem of Consciousness. Journal of Consciousness Studies. 1995; 2[3]:200-19. 8. Tononi, G. Consciousness as Integrated Information: a Provisional Manifesto. Biol. Bull. 2008 Dec; 215: 216242. 9. Nagel, T. What is it like to be a bat? The Philosophical Review. 1974 Oct; 83[4]:43550. 10. Descartes R. Meditations on First Philosophy. 11. Versace M, Chandler B. The brain of a new machine. Spectrum, IEEE. 2010 Dec; 47[12]:30-37. doi: 10.1109/MSPEC.2010.5644776 12. Systems of Neuromorphic Adaptive Plastic Scalable Electronics [SyNAPSE]

[Internet]. DARPA; [cited 2011 Mar 16]. [one screen], Available from: http://webext2. darpa.mil/Our_Work/DSO/Programs/Systems_of_Neuromorphic_Adaptive_Plastic_ Scalable_Electronics_%28SYNAPSE%29.aspx 13. Brains in Silicon [homepage on the Internet]. Stanford: Leland Stanford Jr. Board of Trustees; c2006 [cited 2011 Mar 16]. Sect, People; [about 6 screens] Available from http://www.stanford.edu/group/brainsinsilicon/people.html 14. Koch C, Mathur B. Neuromorphic vision chips. Spectrum, IEEE. 1996 May; 33[5]:38-46 doi: 10.1109/6.490055 15. Livitz G, Versace M, Gorchetchnikov A, Ames H, Leveille J, Chandler B, et al. Adaptive, brain-like systems give robots complex behaviors. Institute of Neuromorphic Engineering; c2011. Doi: 10.2417/1201101.003500 16. Renachip [homepage on the Internet]. Newcastle University; c2008 [cited 2011 Mar 16]. Sec, Objectives; [one screen] Available from http://www.renachip.org/ objectives.aspx 17. Welsh J, Schwarz C, Garbourg Y. The cerebellum as a neuronal prosthesis machine. Progress in Brain Research. 2002. doi:10.1016/S0079-6123[01]30020-1 Kurzweil R. The Singularity is Near. Viking Adult; 2005. 18. Jackson A, Mavoori J, Eberhard E. Long-term motor cortex plasticity induced by an electronic neural implant. Nature. 2006 Nov 2; 444. doi:10.1038/nature05226. 19. Sandberg, A, Bostrom, N. Whole Brain Emulation: A Roadmap, Technical Report. Oxford: Future of Humanity Institute; 2008. 20. Web, Revol. Alan-turing. Digital Image. Flickr.com. 5 October 2009. Web. June 18, 2011. http://www.flickr.com/photos/revolweb/3984345157/ 21. Electronica, Ars. Retina implantat. Digital Image. Flickr.com. 15 March 2011. Web. June 18, 2011. http://www.flickr.com/photos/arselectronica/5529172444/

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Genetic Engineering and Xenotransplantation: Future Considerations and Regulations


Cody Vance Simmons

any are familiar with the ethical dilemmas posed by tissue harvesting, animal testing, and genetic engineering. These scientific areas all relate to another field that has yet to receive the same level of ethical scrutiny: xenotransplantation. According to the U.S. Food and Drug Administration (FDA), xenotransplantation is any procedure that involves the transplantation, implantation or infusion into a human recipient of either (a) live cells, tissues, or organs from a nonhuman animal source, or (b) human body fluids, cells, tissues or organs that have had ex vivo contact with live nonhuman animal cells, tissues or organs (1). Recent breakthroughs in genetic engineering have led to promising advances in overcoming the scientific barriers to xenotransplantation. However, the implications of fast-progressing mammalian genetic engineering and tissue harvesting have not been fully considered in an ethical and regulatory context, making it necessary to address and implement clearer distinctions, terminology, and limits so that such progress does not unacceptably outpace regulation. Xenotransplantation: Background The FDA estimates that 10 Americans die every day waiting to receive life-saving organ transplants (1). Such a drastic organ demand has led several European nations, including France, Austria, and Spain, to institute a presumed consent system in which citizens are presumed to be organ donors unless otherwise specified, which has resulted in increased organ availability (2). Some ethicists have even begun to question the necessity of a patient being dead before initiating transplant surgery (3). In addition to organ replacement, xenotransplantation could also lead to treatments for conditions like diabetes, neurodegenerative disorders, and chronic pain control (4). The first nonhuman primates considered as a potential source for human xenotransplants were chimpanzees, due to their similar size, similar genome sequence, and compatible

Reproduced from [15]

blood type. However, given that this primate is endangered and has shown an increased risk of disease transmission, a porcine (pig) organ source is currently thought to be preferable over chimpanzees and other potential animal sources (5). Pigs reproduce rapidly and have comparably sized organs, and they show a decreased risk of disease transmission due to their phylogenetic distance from humans and to the many centuries over which pigs and humans have been in close contact (5). However, several significant physiological challenges remain with the utilization of porcine organs and tissues:
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Protein differencesMolecular incompatibility of some proteins make successful xenotransplantation less likely to succeed due to malfunction of regulatory processes (5). Antibody-mediated rejectionHyperacute rejection often occurs due to activation of the inflammatory response, which leads to clotting, endothelial damage, and ultimately graft rejection within minutes (6). Cell-mediated rejectionStudies have shown that human T cells can directly recognize porcine antigens and histocompatibility complex through various path ways, complicating efforts to neutralize the damage caused by natural killer cells and macrophages (6). SizeNot all recipients are potential candidates due to differences in organ sizes. LongevityThe lifespan of a pig is approximately 15 years so the longevity of a porcine xenotransplant is unknown. TemperatureThe average body temperature of pigs is 39C, 2C above the average human body temperature, which could affect the activity of important enzymes if transplanted into humans (5). Genetic Engineering: Background The World Health Organization defines genetically modified organisms as organisms in which the genetic material (DNA) has been altered in a way that does not occur naturally (7). The first step in genetic engineering is isolating the gene of interest, a process that usually involves multiplication using polymerase chain reaction (PCR). Following isolation, the gene can be modified and combined with other sequences (such as a promoter and terminator region) in order to function correctly, which usually entails techniques such as restriction enzyme digests, molecular cloning, and DNA ligations (8). A selectable marker is then used to help transform cells with the new DNA, and various tests can be conducted to determine if the DNA is indeed present in the cells. While the challenges to xenotransplantation are not to be underestimated, genetic engineering has already enabled scientists to overcome some of these challenges. The U.S. Company AquaBounty has already produced genetically modified salmon that grow to their full size in half the normal time, and they recently announced that the FDA was close to granting approval for their consumption, despite the concern that the salmon would quickly outcompete and cause extinction of wild salmon if they were ever set loose in the wild (9). In addition, in August of 2010 an investigation by the Food Standards Agency in Britain revealed that milk from a cloned cow had already been put on sale for public consumption (10). Genetic Engineering and Xenotransplantation: Progress and Applications Overcoming challenges to transplantation at a genetic and molecular level has led to significant improvements in the quest to develop xenotransplants from bench to bedside. For example, the deactivation of a gene (specifically the galtransferase gene) in donor pigs coupled with the addition of key human genes involved in regulating immune response has been shown to potentially reduce the risk of rejection and to allow tissue recipients to receive much lower doses of immunosuppressive drugs (11). Further research suggests that a combination of genetically engineered xenograft tissue with tolerance conditioning of the recipient using genetically engineered bone marrow will further help in overcoming rejection (4). Such improvements in xenotransplant efficacy through genetic engineering are expected to continue to improve the immune characteristics and efficiency, and therefore longevity, of these organs and their human hosts. The efficacy of genetically engineered animal products has already been accepted by scientists and the government, even though few regulatory lines have been drawn. On February 6, 2009, the FDA approved the first human biological product produced by GE animals in the United States (12). The product, ATryn, consists of the human antithrombin that was engineered to be produced in goats milk and is used as an anticoagulant to prevent blood clots in patients with hereditary AT deficiency (12). However, the U.S. government has drawn the ethical line with regard to certain areas of research, which forced some projects to move to China that involved the growth of rabbit embryos that had nuclei from human somatic cells (13). In 2004, one investigator discovered that injecting human stem cells into a pig embryo created a fetus with intermingled cellular and genetic components of both pig and human origin (13). Genetically Engineered Animals and Xenotransplantation: Future Research and Ethical Implications Xenotransplantation, compared to most fields of science, is relatively young (4). It has recently received significant attention due to its potential to alleviate the dire shortage of organs and tissue needed for transplantationnot only does xenotransplantation bypass many of the ethical and logistical challenges involved with making human transplants more readily available, but it could make transplants readily available

Given the controversy genetic engineering has already given rise to, imagine the ethical dilemmas if human-animal chimeras are capable of being brought to term and harvested for their organs.

on a wide scale. However, all of the current treatments used to extend xenograft survival involve significant immune suppression; this could result in novel infections by animal-borne pathogens as well as newly emerged infectious agents (6). As described earlier, researchers have already begun to explore developing embryos comprised of genetic material

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from both humans and animals. While the current state of xenotransplantation research involves tissues and organs that are of distinctly animal origin, history has taught us not to underestimate the rate of scientific progress. The capability of producing organs such as muscles, bones, uteri, and neural tissue in animals that mimic, and perhaps are even identical to, those of humans could come sooner than one might think. Given the controversy genetic engineering has already given rise to, imagine the ethical dilemmas if human-animal chimeras are capable of being brought to term and harvested will bring has not been considered to its full scientific, ethical, and regulatory extent. Clearer distinctions, terminology, and limits must be set with regard to the extent of genetic engineering, the species involved and what constitutes said species, and the types of organs and tissues to be harvested. Cody Vance Simmons, a student studying Biology at Brown, has significant interest in the life sciences as well as the commercialization and processes to bring value-add products and treatments to patients. The promising advances and opportunities relating to genetic engineering as well as xenotransplantation, along with the various ethical concerns that have arisen in both of these fields, made this topic a natural choice.

Does an embryo that was humanderived but whose genome is part chimpanzee deserve human rights once born?
for their organs. Does an embryo that was human-derived but whose genome is part chimpanzee deserve human rights once born? And why could one not make a clone of oneself devoid of consciousness, pain, and self-awareness so that any organs needed would be readily accessible? Perhaps more ethically realistic, animals might be genetically engineered to have tissues, and even organs, with completely different functions, functions drastically different than the current human physiology allows. Imagine muscles with altered contractile properties or an engineered organ that requires significantly more energy and could serve as a weight loss mechanism. The future state that progressive mammalian genetic engineering and tissue harvesting
References
1. Vaccines, Blood, & Biologics Xenotransplantation [Online]. 2010 Feb [cited September 24th, 2010]; Available from: URL: http://www.fda.gov/BiologicsBloodVaccines/Xenotransplantation/default.htm 2. Organ donation: An opt-out policy? [Online]. 2010 June [cited September 24th, 2010]; Available from: URL: http://www.usatoday.com/news/health/2010-06-29-organ-donors_N.htm 3. When Does Life Belong to the Living? [Online]. 2010 Sept [cited September 25th, 2010]; Available from: URL: http://www.scientificamerican.com/article.cfm?id=when-does-life-belong 5. Dooldeniya M, Warrens A. Xenotransplantation: where are we today? J R Soc Med 2003. 96: 11-117. 6. Mohiuddin MM. Clinical Xenotransplantation of Organs: Why Arent We There Yet? PLoS Med 2007. 4(3): e75. 7. 20 Questions on Genetically Modified (GM) Foods [Online]. 2010 [cited September 26th, 2010]; Available from: URL: http://www.who.int/foodsafety/publications/biotech/en/20questions_en.pdf 8. Berg P, Mertz J. Personal reflections on the origins and emergence of recombinant DNA technology. Genetics 2010. 184 (1): 917.

Reproduced from [14]

9. GM food battle moves to fish as super-salmon nears US approval [Online]. Sept 2010 [cited September 28th, 2010]; Available from: URL: http://www.guardian.co.uk/environment/2010/sep/26/gm-food-battle-salmon 10. Meat from cloned cow offspring in food chain [Online]. Aug 2010 [cited September 28th, 2010]; Available from: URL: http://www.theaustralian.com.au/news/executive-lifestyle/meat-from-clonedcow-offspring-in-food-chain/story-e6frg8jo-1225901519056 11. Xenotransplantation: A Pig Issue [Online]. June 2010 [cited September 29th, 2010]; Available from: URL: http://www.abc.net.au/science/articles/2010/06/23/2933487.htm 12. U.S. Food and Drug Administration. FDA Approves First Human Biologic Produced by GE Animals. FDA Veterinarian Newsletter 2008 Volume XXIII, No VI. 13. Background: Cloned and Genetically Modified Animals [Online]. Apr 2005 [cited September 29th, 2010]; Available from: URL: http://www.geneticsandsociety.org/article.php?id=386 14. M.D. Lemonick, A. Dorfman, What Makes us Different? Time Magazine. Sunday, Oct. 1, 2006. 15. https://intramural.nhlbi.nih.gov/Offices/OCD/CSRP/PublishingImages/ Cardiac%20Xenotransplantation%20surgery.jpg

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Pandamonium: The Politics Behind a Giant


Hayley Sparks

orget the elephant in the room. The conservation movement has another charismatic mammal that makes experts uncomfortable: the panda bear. Lethargic and adorable, giant pandas have long been emblematic of efforts to protect endangered species. However, in recent years, many question why we devote so much to an animal with which we have had so little success. In fact, the causes of the difficulties with panda protection strike at the heart of what is wrong with conservation today and raise a frightening question: when should we let a species go extinct? Panda Past The giant panda (Ailuropoda melanoleuca) once ranged from eastern China to Myanmar and Vietnam. Bamboo, the pandas main source of food, was plentiful, and the bears had virtually no natural predators. However, in the 20th century, pandas became the victim of human expansion and urbanization. Habitat destruction and poaching reduced the population rapidly. But the pandas decline did not go unnoticed. In 1961, the World Wildlife Fund (WWF) chose the panda to symbolize the newly founded organization dedicated to preserving the worlds biodiversity (1). As a result of WWF, pandas benefited from a kind of visibility on the world stage virtually unparalleled by that of any other endangered species. They appeared on shirts, bags, mugs, and WWF literature. In 1972, the Peoples Republic of China even gave two pandas to the United States as a diplomatic gesture after Richard Nixon visited the country. When the two pandas came to the National Zoo, every day hundreds of people, several rows deep, flocked to catch glimpses of Ling-Ling and Hsing-Hsing (2). Even today, visitor numbers skyrocket when a zoo places a panda on exhibit, reflecting their popularity with the public (1). The public adoration of pandas contributed to an approach to endangered species protection called single-species conservation, which still plays a major role in conservation initiatives today. This model argues that monitoring the health of one species with a specific role in the ecosystem indirectly protects that ecosystem as whole. However, scientists disagree on what this exact role should be. Some support species chosen because of large habitat requirements that encompass the habitats of the other animals; this animal is known as an umbrella species because other animals are within that species protected habitat umbrella. Popular examples include

the northern spotted owl and the California gnatcatcher (3). Others espouse the idea that the single species must be a charismatic megafauna (4). This means that the animal generates interest and sympathy from the public, often becoming the target of anthropomorphism. These species are flagship species. The panda is a perfect example. With a small and scattered range, they cannot be thought of as a species with an expansive habitat umbrella. However, people like pandas and will donate money to protect them because, experts believe, their round faces and big eyes remind us of human babies and trigger parenting instincts (5). This, proponents argue, makes them equally valuable to conserving the entire ecosystem. Unsurprisingly, the vast majority of species that receive this flagship designation are large mammals. Examples include the African elephant, lion, Reproduced from [10] and orangutan. Like the giant panda, these animals fall into this category of charismatic megafauna. China has set aside no fewer than 50 reserves, summing to 10,400 km2 (over twice the size of Rhode Island) to specifically protect pandas (1). These reserves, in theory, should protect all of the inhabitants of the panda habitat, although a recent study has suggested that the health of a flagship species does not reflect the health of other species. (6). Indeed, many scientists now believe that there is no sound ecological reason to expect that a species charisma will enable it to function as an umbrella (4). Increasingly, panda conservation and the flagship movement as a whole have been criticized as deleterious to the original goal of conservation: the promotion of biodiversity. Panda Present To understand this harsh criticism of panda conservation, we must first examine the problems that face panda conservation efforts today and why many now see the panda problem as an insurmountable one. Currently, roughly 1,600 panda bears are thought to live in the wild, spread between remote patches of temperate forest in the mountain ranges of southwestern China (6). The giant pandas, like other bears, have evolved with a digestive system designed for meat, not the bamboo that comprises the vast majority of their diet. As a result, the average panda must spend around twelve hours munching on anywhere between 20 to 40 pounds of bamboo every day. To compare, a polar bear, with a similar digestive system and larger body mass, needs only 4.4 pounds of meat a day to survive (7). Even with that huge intake, because bamboo

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has a nutritional value compathe planets biodiversity. Singlerable to that of cardboard, the species conservation hopes for a panda must conserve energy trickle-down effect of ecological Increasingly, panda and refrains from unnecessary stability to preserve biodiversity movement. This explains its (1). But the key is that preserving conservation and the characteristic lethargy and the an ecosystem is often at odds with flagship movement description of the panda as an preserving one species. Take, for evolutionary dead end by Chris example, the artificial inseminaas a whole have been Packham, the President of the tion of pandas mentioned earlier. criticized as deleterious London Wildlife Trust and the Although millions of dollars have Bat Conservation Trust (8). Even been spent on developing this to the original goal without human interference, betechnique and implementing it of conservation: the cause of the pandas inflexible in zoos, the only possible bendiet, it remains extremely vuleficiaries are the panda bears. promotion of biodiversity nerable to the natural phenomThis is only one example of how enon of bamboo die-out, during the interests of a flagship species which bamboo unpredictably, as often oppose the needs of the the name suggests, dies. During these periods, pandas can larger ecosystem for which it is supposed to raise awareness. starve by the hundreds (6). Furthermore, in Preliminary Assessment of the Flagship However, even more crucially, there remains the ques- Species Concept at a Small Scale, Caro et al. suggest that tion of reproduction. Simply, pandas do not copulate (or even flagship species are not even a good indicator of the health show an inclination to do so) very often. The only time male of other organisms within their ecosystem. That is, flagship and female pandas interact is the one time per year when the speciesdo not protect disproportionately high numbers female ovulates. Yet scientists have observed that even then, of species or high species abundances at a small ecological these attempts often end in failure, with one member of the scale (9). This suggests that flagship species density does not pair losing interest before the male can inseminate the female reflect the density of other animal populations in the region (6). To counter this, the process of artificial insemination is and that there is little value in giving that species priority in now used in many captive breeding situations and has had conservation funding and initiatives. success. However, although artificial insemination produces This examination of the failings of the flagship singlepanda cubs, they are often ill equipped to survive outside species model, especially as it relates to pandas, brings us of captivity, despite breeders best efforts to minimize hu- back to the original question: when should we let a species man interaction and prepare the cubs for life in the wild. For go extinct? The marketability of an endangered species is not example, Xiangxiang, a panda born at the Wolong National something to ignore. The Chinese River Dolphin pinpoints the Nature Reserve in China, inexplicably died less than a year effect that the popularity of an animal with the public can have. after his release into the wild even after years of preparation Slimy and fleshy pink, the dolphin could never be considered (6). In light of the difficulties mentioned above, it is easy to a charismatic megafauna. Unlike the panda, who lives in the understand why conservationists feel at a loss. Resources are same habitat, the dolphin quietly disappeared and went extinct finite, and panda conservation is hugely expensive. However, over the last decade. The flagship species model, despite all this is not a reflection on panda conservation efforts so much of its failings, at least generates public awareness, preventing as on the efficacy as the flagship model as a whole. an animal from going extinct without public knowledge or interest. Clamoring over the failings of a model for which we Panda Future have no better option might merely create pandamonium. Ninety-nine percent of species that have lived on the earth have gone extinct. The trend has certainly accelerated in recent Hayley Sparks 14 is a biology concentrator from Washington, D.C. years, almost definitely as a result of human expansion (1). She has worked at the Smithsonian National Zoo for the past five For this reason, we must support conservation efforts to save years, and especially enjoys working at the panda enclosures.
References
1.World Wildlife Fund. Species fact sheet: Giant Pandas. WWF Worldwide; [updated 2011]Available From: http://www.worldwildlife.org/species/finder/giantpanda/ panda.html 2. Byron J. Pat Nixon and Panda Diplomacy. The New Nixon Blog [Internet]. The New Nixon. 2011 Feb - [cited 2011 May 1]. Available from:http://blog. nixonfoundation.org/2011/02/pat-nixon-and-panda-diplomacy/ 3. Blair, R.,Fleishman, E., Murphy, D. Selecting Effective Umbrella Species. Conservation Magazine. 2001. 2(2) Blair, R.,Fleishman, E., Murphy, D. Selecting Effective Umbrella Species. Conservation Magazine. 2001. 2(2) 4. Simberloff, D. Flagships, umbrellas, and keystones: is single-species management passe in the landscape era?. Biological Conservation. 1998; 83 (3): 247-257. 5. Verhovek, SH. So why are pandas so cute? The Washington Post.[Internet]. Published: May 11,1987 (cited 2011 May 1). Available from: http://www.nytimes. com/1987/05/11/nyregion/so-why-are-pandas-so-cute.html 6 .Du, B., Ran, J., Yue, B. Conservation of the endangered giant panda ailuropoda melanoleuca in China: successes and challenges . Fauna & Flora International. 2009. 43(2):176-178. 6. Caro, T., Engilis, A. , Fitzherbert, E., Gardner, T. Preliminary assessment of the flagship species concept at a small scale. Animal Conservation. 2004: 63-70. 7. SeaWorld Adventure Parks. Polar Bears:Diet & Eating Habits. SeaWorld. Available From: http://www.seaworld.org/animal-info/info-books/polar-bear/diet.htm 8. Scoones, T. Springwatch 2009, new presenter team announced. BBC two [Internet]. 2009 Mar-[cited 2011 May 1]. Available from: http://www.bbc.co.uk/blogs/ springwatch/2009/03/springwatch_2009_new_presenter.html 9. Caro, T., Engilis, A. , Fitzherbert, E., Gardner, T. Preliminary assessment of the flagship species concept at a small scale. Animal Conservation. 2004: 63-70. 10. http://advocacy.britannica.com/blog/advocacy/wp-content/uploads/wwf-1.gif

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The Battle Over Gene Ownership


Gaurie Tilak

We dont own our genes. Although they function in our bodies, we cannot isolate, purify, and use them without permission. The human body contains 23,688 genes that perform dozens of different functions [1], and 20 percent of these are owned by third parties such as universities, government agencies, and private companies. However, this may change as courts call into question the validity of patents on naturally occurring genes. Since 1980, the US Patent and Trademark Office, or USPTO, has granted patents on 4,382 isolated DNA sequences [1]. These patents are divided into three distinct types [2]: a matter patent applies to an isolated and purified sequence of DNA; a function patent refers to a particular use or function of a given compound [this would apply to a company that patented the use of specific mutations in a gene to screen for risk of a disease]; and finally, a process patent applies to any techniques used to isolate, modify, or analyze genetic material. Companies often own multiple types of patents relating to a single gene. Some genes have as many as 20 unique patents relating to various functions and forms [1]. This practice of granting gene patents has been contentious on both legal and ethical levels, especially regarding matter patents, which protect isolated genes that occur naturally in the human body. Historically, legal precedent has driven the regulation of biotechnology patents. However, a recent court case against Myriad Genetics, Inc., has challenged the prevailing notion that isolating a sequence of DNA changes it enough to make it patentable. The judge in the case invalidated a patent on two genes related to breast cancer, stating that DNA couldnt be patented, even if it is separated from a living organism. The precedent set by this case could lead to new guidelines or restrictions that force courts to re-evaluate and possibly revoke existing patents. Genetic research can cost hundreds of millions of dollars, so any restrictions on patents may prevent scientists from pursuing genetic research and potentially limit new diagnosis and treatment techniques [2]. Legal History The general guideline set forth by the USPTO states that whoever invents or discovers any new and useful process, machine, manufacture, or composition of matter, or any new and useful improvement thereof, may obtain a patent thereof [3]. US courts have further specified that naturally occurring animals, plants, and chemical compounds are not patentable [2]. Based on the language of this guideline alone, unaltered DNA should not be eligible for a patent. However, the USPTO has been granting gene patents anyway, allowing institutions

to own material that occurs naturally. These decisions have been based on a combination of the USPTO guidelines and legal rulings, which have blurred the distinction between natural and man-made. The practice of distinguishing natural from man-made has proven to be a challenge. In 1980, the US Supreme Court case Diamond v. Chakrabarty set the prevailing precedent on the matter. Researcher Ananda Chakrabarty had modified a bacterium to be capable of metabolizing crude oil [2]. His patent application was initially rejected by the USPTO on the grounds that bacteria were products of nature and therefore not patentable [4]. The case was appealed to the US Supreme Court, which ultimately ruled that the bacterium could be patented because it was a product of human ingenuity that had been modified from its natural form [2]. The Chakrabarty case set the precedent for biotechnology patents; however, unmodified DNA is not the same as a genetically altered bacterium. Courts have typically accepted DNA patents following the logic that previous patents have been granted on purifications of naturally occurring substances, such as adrenaline and vitamin B-12 [5]. However, this contradicts the restriction that naturally occurring chemical compounds are ineligible for patents. The discrepancy is justified by the belief that isolated chemical compounds are treated as inherently different from their naturally occurring forms. That is, a chemical or sequence of nucleotides in Reproduced From [10] a Petri dish is legally different from that same chemical or sequence of nucleotides inside a human cell [6]. This principle guided patents on biological molecules until recent controversy over patents on DNA sequences forced courts to re-examine the original guidelines. The granting of gene patents was challenged and deemed invalid in a federal district court in 2010 in the case Association for Molecular Pathology et al. v. U.S. Patent and Trademark Office et al [7]; the genes in question were used as a screening tool by the company that owned the patent, and the presence or absence of the genes could determine a persons risk of developing breast cancer [7]. This differs from previous patents on biological molecules, in which the manufacturing and sale of the molecule were protected by patent. On an ethical level, the question is whether it is it appropriate to allow an organization to claim ownership of something that is an integral part of a living organism. The Myriad Case This ethical problem associated with gene patenting was brought into the public sphere last year when Myriad Genetics and the USPTO were sued in the federal district court of New

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York City over patents on two human genes associated with breast and ovarian cancer. In March 2010, a district court judge Reaching a Compromise challenged the prevailing notion that isolating DNA changed The first step in reaching a compromise is to create a definitive it in a way that made it patentable [6]. The case, Association set of standards guiding gene patents. One possible solution for Molecular Pathology et al. v. U.S. Patent and Trademark is to restrict the types of gene patents granted to function and Office et al. called into question the rights of Myriad Genetics, process patents, which fall within the bounds of the types of a private biotechnology firm, to exercise exclusive rights to discoveries eligible for patents. Matter patents, on the other two human genes associated with breast cancer [7]. hand, blur the line between natural and synthetic. Myriad was using the presence of key mutations in the The granting of matter patents on gene sequences should two genes, BRCA1 and BRCA2, to screen patients for risk of be discontinued, but companies should still be granted patents breast cancer. They were using a combination of their own on novel uses of genetic sequences or new methods of analysis. patents and licensing agreements with owners of related pat- As in the Chakrabarty case, this would allow the researcher ents to run a monopoly on testing for the BRCA mutations. to hold rights over the use of a certain gene to induce bacteria US District Court Judge Robert Sweet ruled that the patented to process crude oil. Other researchers would still be free to sequences are products of nature, that isolated forms are not study the same gene in its potential for other uses. significantly different from naturally occurring compounds, This is a difficult distinction in cases such as that involvand the sequences therefore should not be patentable [6]. ing Myriad. The opposition in the case came from parties that The decision isnt as straightforward as it may seem. As wanted to use the BRCA genes in cancer risk assessment, a described earlier, there are different function that Myriad developed. In types of patents relating to DNA. this case, the best conclusion may be Sweets ruling would prohibit the to allow Myriad to continue holding granting of matter patents on isolated exclusive rights over the use of the Breast cancer is only one genetic material. However, Myriad specific mutations identified by the of twenty-two common owned multiple patents, including company in the BRCA genes for dia function patent on the use of key agnosis. If other portions of the same genetic disorders with mutations in the BRCA genes in pregene were later found to be useful patented screening dicting risk for cancer. While Myriads in diagnosis, or if the same gene was patents on the genes themselves later found to have other uses, Myriad techniques were declared invalid, their diagwould not be permitted to claim those. nostic process, BRCAAnalysis, was In exchange, that is, Myriad and the not challenged [8]. This is a notable other parties involved would concede outcome because the plaintiffs in the case were interested in rights to the actual genes, allowing other researchers to study using the BRCA genes to test for breast cancer risk, a function those sequences freely and possibly develop genetic therapies that arguably still belongs to Myriad. to counteract the risk of developing cancer. This may not sit Myriad has announced that it intends to appeal the decision well with some researchers, but it does fall in line with the to the Supreme Court [8]. Since US patent laws dont address type of innovation that patent law was created to protect. the matter of gene patenting at all, the case is likely to be heard A decision on the rights of companies to have exclusive by a higher court than the District Court of New York [where control of genetic testing must be made soon, as breast cancer this decision was made], although a date for the hearing has is only one of 22 common genetic disorders with patented not been set at the time of writing. However, if the decision is screening techniques [9]. The ultimate decision on this matupheld, it could have serious implications for the thousands of ter is in the hands of US Congress through its regulation of other patents on genomic sequences, such as Amgens patent the Patent and Trademark Office. But the outcome will have on erythropoietin or the University of Californias patent on far-reaching consequences, as there are millions of dollars human growth hormone. Both of these patents have led to in licensing fees and immeasurable benefits to the field of millions of dollars in revenue for their holders [2]. If patents medicine at stake. such as these are overturned, universities and corporations may be more reluctant to invest in research into naturally Gaurie Tilak graduated from Brown University in May 2011 with a double major in Economics and Biology. occurring compounds.
References
1. Jensen K, Murray F. Intellectual Property Landscape of the Human Genome. Science. 2005 Oct 14; 310: 239-240. 2. Resnik D. DNA Patents and Scientific Discovery and Innovation: Assessing Benefits and Risks. Science and Engineering Ethics. 2001 March; 7(1): 29-62. 3. United States Patent and Trademark Office. Appendix L Patent Laws. United States Code. 1997 Title 35, 100-105. 4. Nuffield Council on Bioethics. The ethics of patenting DNA. London: Nuffield Council on Bioethics; 2002. 5. Eisenberg R. Structure and function in gene patenting. Nature Genetics. 1997 Feb; 15: 125-130. 6. Marshall E. Cancer Gene Patents Ruled Invalid. Science. 2010 Apr 9; 328: 153. 7. Association for Molecular Pathology v. USPTO, 669 F. Supp. 2d 365 (S.D.N.Y. 2009). 8. Barton S. Federal District Court Rules Isolated DNA Claims are Not Patentable. [Internet]. Salt Lake City: Myriad Genetics, Inc.; 2010 March 30 [updated 2010 March 30; cited 2011 March 27]. Available from: http://investor.myriad.com/releasedetail. cfm?ReleaseID=455348 9. Huys I, Berthels N, Matthijs G, and Van Overwalle G. Legal uncertainty in the area of genetic diagnostic testing. Nature Biotechnology. 2009 Oct; 27: 903-909. 10. http://www.openclipart.org/detail/138187

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Moving Forward? The Role of the State Hospital in the Mental Healthcare Recovery Movement
Kyle Abraham Wemple
The Recovery Movement and the State Hospital sentence shorter than life. As a result, mechanical restraints, revention Works. Treatment Is Effective. People Do Recover. lobotomies, and, later on, heavy doses of medication were This is the slogan for SAMHSA, the Substance Abuse and used to subdue individuals and make them more compliant. Mental Health Services Administration. Considering its dark The above images, while accurate, are what drive those who history rooted in rusty shackles and icepick lobotomies, mental support the recovery movements attack on the state hospital healthcare came a long way in the twentieth century. But despite system. What is often ignored, though, is that todays reality of its many advances in the past 100 years, Psychiatric treatment the state hospitalization system is drastically different. Those throughout the majority of this time was synonymous with who are treated in these facilities experience the most humane state hospitalization. Today, the landscape is much different. of care and are evaluated often to determine if or when they The state hospitalization system, will be able to be discharged as often viewed as outmoded and well as what their best options irrelevant in the modern era, has are after that point. Many patients The mental healthcare system been shrinking at a steady rate stay for only a few months, while since the 1980s. In fact, this isothers require a longer time peought not to concern itself sue has become the core focus of riod to become stable. This shift solely with the closure of state many advocates for mental health can be observed throughout the rights. The progressive recovery entire mental healthcare system hospitals, but focus on the movement, begun in 2004, lobbies and stems from advances in broader picture of what is best for programs such as supportive neuroscience that have shown public housing as a substitute us how our brains function biofor the entire community for care in a state hospital. Such logically. Because we are better facilities allow individuals to live able to explain mental illness, in a supervised, home-like setsociety has accepted that the ting. However, these treatment alternatives are inadequately mentally ill cannot be treated as second-class citizens. The funded, and the reality is that people with mental illness are recovery movement is the latest development in this overhaul, not receiving the care they need. The mental healthcare system aiming to shift the view of people with mental illness from ought not to concern itself solely with the closure of state patients to people through emphasis on the individual hospitals but to focus on the broader picture of what is best and self-empowerment. for the entire community. Advocates need to recognize that the complete elimination of the state hospital system would be The Recovery Movement detrimental in several ways. Adequate treatment alternatives The recovery movement began in the field of substance abuse must be established and funded before any action regarding treatment and is based on the principle that people must bethe closure of state hospitals can be taken. In addition, state lieve that they will benefit from a treatment in order for it to hospitals will always remain the best option for a small per- be effective. Consumers (the preferred term for patient, the centage of people who are unable to live safely on their own word itself intended to empower) are now given a significant or in supportive public housing. role in deciding which medications and treatments work best for them. Psychiatrists and treatment teams, who evaluate The Evolution of Mental Healthcare consumers in various settings, no longer demand complete Up until the last part of the 20th century, the mentally ill were obedience. They hold conversations with individuals and ema grossly misrepresented and mistreated class of people, a phasize the attitude that recovery, as with any physical illness, situation that stemmed from a general ignorance of the inner is the ultimate goal and is reachable (1). Out of the shift in atworkings of the brain. The majority of the mentally ill population titude toward treatment have grown myriad treatment options was relegated to insane asylums, known today in America as designed to address individual needs. For the least severely state hospitals. Within the confines of these facilities, people ill, outpatient treatment from a psychiatrist can be coupled with mental illness were prisoners who were at times victim- with psychotherapy and/or the assistance of a case worker. ized by cruel experiments and had little hope of serving any Certified Peer Specialists (mental health consumers who are

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Reproduced from [7]

while monitoring their safety and trained to work with others who stability. Currently, this is seen are struggling with mental illas a key stepping-stone for many ness) are being hired in several the fact is that supportive consumers in the transition from states. Their personal insight life in a state hospital to indepenaids them in looking for warnpublic housing is not receiving dence, but it also exists as a more ing signs that a consumer is not the funding it requires to permanent form of residence for doing well and allows for enindividuals who may be incahanced support and reassurance make up for this loss in [state pable of or uncomfortable with that mental illness can be conhospital] availability living entirely independently (2). quered (2). However, hospitals In favor of options such as this, have not been entirely eliminated state hospitals began shrinking from the mental health field. If a in the 1980s. Between then and consumer is deemed a threat to himself or those around him, he can be committed voluntarily today, the total number of beds in state hospitals nationwide or involuntarily to a general hospitals psychiatric ward for a shrank from 600,000 to 40,000 (3). This is an obvious victory for few days to a month or more. And in the most extreme cases, those who oppose this systemhowever, the fact is that supconsumers still end up in a state hospital, for stays ranging portive public housing is not receiving the funding it requires to make up for this loss in treatment availability. In recent from a few months to several years. years, funding for lower-cost mental healthcare programs (such as Certified Peer Specialists) has grown. However, states are Supportive Public Housing and Potential Savings Many leaders in the recovery movement see the elimination unwilling to invest in the higher-cost options required by the of state hospitals as the ultimate goal for mental healthcares most severely mentally ill. Supportive housing is sparse at future, and supportive public housing is viewed as the perfect best and cannot make up for the reduction of space at state alternative. Consumers live together in a home-like environ- hospitals (4). States would save money if they simply followed ment, similar to a halfway house (an apartment-like setting the recovery movements lead in expanding these community with staff available 24/7). This system provides individuals settings. According to the Mental Health Association, the averwith the rights afforded to independent members of society age annual cost per individual for institutional (state hospital)

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care is $130,000. By comparison, the average cost per year for a community housing placement (including all mental health treatment) is about $60,000 (5). This figure makes the recovery movements point that state hospitals ought to be eliminated in favor of supportive public housing. However, until these changes are enacted, we cannot preemptively close the best system we have to treat a percentage of people with mental illness. The State Hospitals Role Today This issue is not simply a matter of money; it is also a matter of social justice and responsibility. If a person who suffers from mental illness is not properly attended to, his recovery, his safety, and the safety of those around him are jeopardized. Many individuals in this situation return for a repeat hospitalization or, worse yet, end up in jail after committing some act while living in an altered state of reality. Shockingly, roughly two-thirds of prison inmates are estimated to have mental illness, and 16.7 percent suffer from a serious mental illness (defined by a specific level of interference that the illness has with an individuals life) (6). Another striking fact: 40 percent of all people diagnosed with a serious mental illness
Reproduced from [8]

the best existing facilities we have to treat the most severely ill. What many recovery advocates seem to ignore is that some consumers simply require too much individual attention to make community living an option. The current population of state hospital patients consists of many individuals who fall into this category. Where will these people go if the few remaining state hospitals are closed? For this small population of people with mental illness, the recovery movement may be less effectual than advocates would like to believe. The

We as a society have a responsibility to assist all individuals who suffer from illness of any sort in the best way possible
most severely mentally ill may never recover enough to live in an alternative setting, a reality that is overlooked by the recovery movement. While it may be disheartening, it is a fact of medicine that some peoples baseline is always going to require intense supervision and a locked facility. We cannot ignore their specialized needs; therefore, it is necessary to keep an adequate number of beds available in state hospitals. The recovery movement has been a giant step forward in the area of mental healthcare, vastly improving the lives of many. But the movement must also reappraise its priorities and set aside the idea that the state hospital system needs to be entirely eliminated. The next step in mental healthcare rests on the shoulders of state governments, who need to fund treatment alternatives. But once this is complete, the few remaining state hospitals need to remain open to serve those who truly require their services. Once this has occurred, the full effects of the recovery movement can be felt, and mental healthcare will be where it ought to be in 21st-century America. Kyle Wemple 14 is a student at Brown University with a planned double-concentration in Cognitive Neuroscience and Philosophy. His interests lie in the area of mental illness and he is considering working as a researcher for treatment methods.

are incarcerated at some point in their lives, and that there are estimated to be more people with mental illness in prisons than in hospitals (6). We as a society have a responsibility to assist all individuals who suffer from illness of any sort in the best way possible. Accordingly, funding for supportive public housing and other progressive methods of treatment needs to be increased. It is imperative to realize that until this is done and such programs are firmly planted, we cannot eliminate
References
1. National Association of Social Workers. NASW Practice Snapshot: The Mental Health Recovery Model. Available at: URL: http://www.naswdc.org/practice/ behavioral_health/0206snapshot.asp. Accessed March 11, 2011. 2. TIME. De-Criminalizing Mental Illness. Available at: URL: http://www.time.com/ time/health/article/0,8599,1651002,00.html. Accessed March 12, 2011. 3. Stairways Behavioral Health. Certified Peer Specialists. Available at: URL: http://www.stairwaysbh.org/programs_for_adults/skills- based_programs/certified_ peer_specialist/. Accessed March 12, 2011. 4. National Alliance on Mental Illness. State Mental Health Cuts: A National Crisis. Available at: URL: http://www.nami.org/Template.cfm?Section=state_budget_cuts_

report. Accessed March 13, 2011. 5. Mental Health Association in Greensboro. Mental Health Association in Greensboro. Mental Health Association in Greensboro, 2005. Web. 18 May 2011. <http://www.mhag.org/mental_health_facts.cfm>. 6. Associated Press. Budget Cuts Force Jail Time for Mentally Ill. Available at: URL: http://www.msnbc.msn.com/id/42029240/ns/health-mental_health/. Accessed March 13, 2011. 7. http://upload.wikimedia.org/wikipedia/commons/4/49/Danvers_State_ Hospital%2C_Danvers%2C_Massachusetts%2C_Kirkbride_Complex%2C_circa_1893. jpg 8. http://healthypeople.gov/2020/topicsobjectives2020/images/mentalHealth.jpg

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Ending the Free Ride: A Two-Tiered Organ Donation Paradigm


David Winer

n the face of a global organ shortage, debates abound regard- important ethical dilemma: would it not be more equitable ing a new approach: the adoption of organ donor registries for there to be a difference in treatment between those who that presume consent for posthumous donation (often re- are registered as organ donors and those who are not? Here, I ferred to as opt-out seek to tackle this quesschemes). At first glance, tion: I claim that national the central cause of this organ donor registries scarcity appears to be should operate under that of incentive: if there a two-tiered paradigm is nothing compelling whereby registered individuals to sign up organ donors get first for donor registries, it preference for receiving seems unlikely that they transplant organs. will do so out of pure To clarify, I am not altruism. This point has attempting to engage the become the crux of the opt-in/opt-out debate in opt-in/opt-out dialogue: this article. This discusperhaps the number sion has been carried out of organ donors will ad nauseam elsewhere increase if individuals (2). Here, I seek to take must actively remove the opt-out framework themselves from donor as a given and delve into registries to escape the the ethically more compossibility of posthuplex realm of donor primous donation. ority. Normatively, this Another key paapproach makes sense, rameter relating to the because the ethical obstaorgan donation debate cles to establishing a doseems to have been taknor priority scheme are en for granted, however. much more substantial In almost all countries than those to establishing with organ donation an opt-out system. This is registries, those who are because opt-out systems registered as donors and those still give individuals free choice who are not are afforded equal regarding their donor status, while access to transplant organs. On the addition of the donor-priority In 2009, for example, there the surface, such an arrangecomponent to any organ donation ment may appear somewhat scheme automatically pressures were 12 waiting recipients counterintuitive, but a precedent individuals to become (or remain) on the United States kidney certainly exists for differential organ donors. As a result, demtreatment between those who onstrating the necessity of donor transplant list for every impart a social benefit and those priority implicitly questions the transplant surgery who do not. People who give importance of the main objection to charity, for example, are afto opt-in schemes: that they violate forded a reduction in their taxes, individual autonomy. and military veterans often reA Brief History of the Donorceive special benefits in the form of education grants (1). While Priority Model the levels of personal sacrifice involved in making charitable A two-tiered system already exists in two countriesIsrael contributions and serving in the military may not exceed that and Singapore. In Singapore, a mass organ shortage prompted involved in organ donation, this example brings to light an the passage of the Human Organ Transplant Act (HOTA) in
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1987 (3). HOTA established an opt-out kidney transplant program for non-Muslim Singaporean citizens. Muslimswho comprised 14 percent of Singapores populationwere not included unless they explicitly opted in due to the widespread belief that organ donation violated Islamic religious doctrine (4). For many years, Muslims and individuals who chose to opt out of the program were given lower priority for receiving kidney transplants. In 2004, the legislation was amended to include regulation for heart, liver, and corneal transplants, and in 2008, the Muslim exemption was removed, ensuring that Muslims had the same access to transplant organs if they chose to remain on the donor registry. Since HOTA was first passed in 1987, the number of patients receiving donated organs has risen from five to 49 per year: almost a 900-percent increase (5). This growth is especially impressive considering the fact that Singapores population has not even doubled in that time (6). The Israeli donation system is similar: in response to the fact that only 10 percent of Israeli citizens held donor cards, the Knesset (the Israeli legislative body) approved a law in 2008 that mandated that three years after signing up for the national registry, Israeli organ donors would be given legal priority for receiving organs (7). While the impact of this change remains to be seen, the situation in Israel is slightly more complex than that in Singapore: while only a small minority of Singaporeans are Muslim, 76 percent of Israelis are Jews, and a widespread belief exists among communities of orthodox Jews that mutilation of a dead body violates Talmudic law (8). Moreover, Israel still operates under an opt-in paradigm, so individuals who wish to receive organ donor status must take the extra step of signing up for the national registry. Organ Shortage and What Two-Tiered Systems Can Do to Help The strictly utilitarian argument for a donor-priority scheme in countries like the United States and the United Kingdom is fairly straightforward: there are simply not enough people registered as organ donors. In 2009, for example, there were 12 waiting recipients on the United States kidney transplant list for every transplant surgery (9). The supply of viable organs in the United Kingdom also consistently fails to meet the countrys demand, as only 25 percent of British citizens are registered as organ donors (9). Even in countries that have already adopted opt-out (but still one-tiered) schemes, the supply of organs still tends to fall short of demand. Spain, for example, has the most successful organ donation program in the world, but its supply of viable organs is insufficient, and patients in need continue to die while on the waiting list (10). Other countries have been even less successful: in spite

Reproduced from [13]

of their opt-out programs, Italy and Norway still have lower donation rates per million people than the United States (11). The dilemma is clear: countries with one-tiered donor systems suffer from a draining free-rider problem. Individuals who hold donor cards and those who do not all receive the exact same benefits. Government policy must provide a distinct advantage to signing up for the national donor registry; oth-

The dilemma is clear: countries with one-tiered donor systems suffer from a draining free-rider problem

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erwise, no reliable reason exists for which people will pledge their organs. freedom under a certain set of constraints. The only remaining point of debate, then, is whether the particular constraint that she is subject to is fair. Of Fists, Faces, and Organs: Ethical Ramifications The main reason why one might object to signing up for The ethical reasons for the donor-priority paradigm are slightly an organ donation registry is that it violates ones personal more contentious. Ultimately, a two-tiered organ donor registry religious, moral, or spiritual beliefs. Liberal democratic values would even out the playing field: those who demonstrate tend to respect individuals rights to maintain these views. Such community-mindedness by remaining organ donors would convictions ought not be imposed upon others, however; if a receive more benefits than those who do not. This line of spiritual group publicly proclaims that paying taxes violates reasoning is the counterpart to its scriptural doctrine, the state the widely accepted proportionshould not defer to that declaality requirement for just punration, as doing so would take ishment: that societys treatment undue advantage of those who do Given that the distribution of individuals must correlate in fulfill their civic responsibilities. of organs is zero-sum, it some way with their actions. In The classic liberal analogy apthe same way that a shoplifter plies: the freedom to move ones seems flagrantly unfair would never receive the same hand ends where anothers face to give transplant organs punishment as a murderer, an begins. Accordingly, a one-tiered organ donor should not receive organ donation system imposes a to those who were never the same benefits as someone who perversely biased social morality. willing to donate, while does not demonstrate a similarly Each individual who agrees to robust social conscience. take organs but never offers to their counterparts who One possible criticism of donate them confers a further were willing to make such the two-tiered model involves degree of unfairness upon the individual autonomy: perhaps social order, as she profits from a sacrifice die in need of people lose the free choice to the charity of her fellow citizens transplants decide whether or not they while offering no similarly alwant to become organ donors truistic contribution. Given when they are manipulated by that the distribution of organs a donor-priority rule. The problem with this analysis is that is zero-sum, it seems flagrantly unfair to give transplant orit relies on one inherently flawed assumption: being forced gans to those who were never willing to donate, while their to make a choice given certain constraints does not imply a counterparts who were willing to make such a sacrifice die significant loss of autonomy; in fact, it is a type of situation in need of transplants. that confronts us regularly. A struggling homeowner might Thus, the donor-priority paradigm not only lives up to face the choice between having enough money to purchase standards of fairness, but also corrects for a systemic social life insurance and having enough money to pay his monthly injustice that exists in every nation where a one-tiered donamortgage bill. We would not say that this unfortunate head tion system persists. Until more nations adopt this model, it of household is suffering a loss of free choice simply because will be difficult to tell whether it will actually increase the he must make a difficult decision. Rather, we would say that number of donors per se. We can, however, be certain of one whichever decision he makes will be motivated by his personal thing: it will ensure fairness for both donors and recipients priorities (his familys long-term financial security or his at- of transplant organs. tachment to his home). Similarly, the individual faced with a two-tiered organ donation scheme is not forced to make David Winer is a junior applied math concentrator at Brown University. any particular choice. On the contrary, she is given complete His interests include bioinformatics, genetics, and medical ethics.
References
1. Australian Electoral Commission. Electoral Offences [Internet]. 2010 [cited 2010 Sept 29]. Available from: http://aec.gov.au/. 2. Pope TM. Legal briefing: organ donation and allocation. J Clin Ethics 2010 Fall;21(3):243-63. 3. Live On. Human Organ Transplant Act [Internet]. 2009 [cited 2010 Sept 29]. Available from: http://www.liveon.sg/organ/. 4. Schmidt VH, Han LC. Organ Transplantation in Singapore: History, Problems, and Policies. Soc Sci Med 2004 Nov;59(10):2173-82. 5. Statistics Singapore. Time Series on Population (Mid-Year Estimates) [Internet]. 2010 [cited 2010 Oct 2]. Available from: http://www.singstat.gov.sg/. 6. Lavee J, Ashkenazi T, Gurman G, Steinberg D. A New Law for Allocation of Donor Organs in Israel. Lancet 2010 Mar;375(9720):1131-3. 7. Sela N. Ultra-Orthodox Rabbis Slam Organ Donation Bill. YNet Jewish World [Internet]. 2010 [cited 2010 Sept 29]. Available from: http://www.ynetnews. com/. 8. USTransplant. Aggregate National Kidney Report [Internet]. 2010 [cited 2010 Sept 21]. Available from: http://www.ustransplant.org/. 9. United Kingdom Department of Health. The Potential Impact of an Opt Out System for Organ Donation in the UK: an Independent Report from the Organ Donation Taskforce [Internet]. 2010 [cited 2010 Oct 5]. Available from: http://www. dh.gov/uk/en/Publicationsandstatistics/. 10. Web ONT. Historia de los Transplantes [Internet]. 2010 [cited 2010 Oct 12]. Available from: http://www.ont.es/. 11. Transplant Australia. Statistics [Internet]. 2010 [cited 2010 Oct 6]. Available from: http://www.transplant.org.au/. 12. Kidtransplant (NIH) [image on the Internet]. 2006 [updated 2010 Sept 8; cited 2011 May 30]. Available from: http://en.wikipedia.org/wiki/File:Kidtransplant.jpg 13. Pig heart bypass [image on the Internet]. 2006 [updated 2007 Feb 10; cited 2011 May 30]. Available from: http://commons.wikimedia.org/wiki/File:Pig_heart_bypass. jpg

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Examining the Prospects of Deep Brain Stimulation as Mood Disorder Treatment


Adela Wu

or ten years, former avid dancer Robert Ritz struggled to move and control his limbs. Suffering from essential tremor, a condition that produced involuntary jerking movements of his arms and legs, Ritz sought relief with medicine. Unfortunately, he began to have more problems with the medicine than with the tremors (1). Eventually, his doctor performed deep brain stimulation (DBS), which is primarily aimed towards patients like Ritz, who retain symptoms despite medication and treatment. With DBS, the results were dramatic. Just two months after the surgery, Ritz could walk normally, decrease his medication, and return to dancing. Introduction First mentioned in clinical journalsThe Journal of Neurology, Neurosurgery and Psychiatryin 1993, DBS is an invasive procedure that places microelectrodes in precise cortical regions while a battery pack controls electrode activity (2). When electrical pulses run through these electrodes, abnormal neurochemical release and neural firings are silenced through artificial disruption, and the patient is partially, or even completely, relieved of his symptoms. This practice of disrupting certain neural irregularities is reminiscent of older methods

polar disorder in addition to movement disorders. In reality, though, mood disorders involve comparable symptoms and show similar neural activity. Patients with treatment-resistant movement disorders have consistently given accounts of dramatic improvement in quality of life following DBS surgery. So, why not use DBS as a miracle procedure to treat other neurological and psychological ailments as well? Could mood disorders in particular, such as bipolar disorder and depression, be treated just as successfully? Standard Treatments for Mood Disorders Mood disorders rank within the top 10 leading causes of disability among both males and females (4). Recent statistics from the National Institute of Mental Health show that, at any one time in the United States, 9.5 percent of the population suffers from bipolar disorder or depression (5). These disorders show a similar prevalence on a global scale as well (6). Establishing a comprehensive mental health system that offers adequate treatments to fight psychological illnesses is more relevant than ever. Of the current treatment options, prescriptions and psychotherapy are the most common. Depending on the nature and the severity of the mood disorder, patients undergo different types of psychological rehabilitation, including individual or cognitive therapy (7). In order to build supportive relationships between the patient and the therapist, psychotherapy lasts for several years and could very well last for life. In conjunction with therapy, medications are also available. For depression, patients could be prescribed selective serotonin reuptake inhibitors (e.g., Prozac), while bipolar disorder patients take lithium as a mood stabilizer (7). Unfortunately, there are problems with consistency and patient utilization of available treatments. Mood disorders vary in severity and onset, and it isnt possible to tailor-make mass-produced pharmaceuticals for every individual. With only generic medication available, some individuals inevitably do not respond completely and therefore cannot rely on antidepressants to relieve their treatment-resistant depression. Furthermore, for currently available treatment options to successfully alleviate mood disorders, patients themselves must be proactive and invested in improving their own mental health. Many patients with depression report inconsistent use of antidepressants because of adverse side effects or misunderstandings about the nature and length of the treatment (8). A few weeks of taking medication is not enough to prevent relapse of symptoms, which is most likely to occur during the first year after seeking treatment (8). Successful treatment is also hindered by scant use of mental health services. Of the American population suffering from depression, dysthymia,
2011, The Triple Helix, Inc. All rights reserved.

Mood disorders rank within the top 10 leading causes of disability among both males and females.
of lesioning or electroconvulsive therapy (ECT) (3). However, unlike the irreversible lesioning surgery and ECT, which affect the entire brain, DBS serves as a safer alternative while applying the same theorytargeting functional structures to elicit relief. DBS differs in that its microelectrodes can be shut off should there be substantial side effects or problems with the hardware. Furthermore, a battery with settings programmed prior to implantation controls the microelectrodes, giving patients added autonomy from their disabling disorders for years at a time. Now established and approved as a well-grounded functional neurosurgery technique to treat various movement disorders like tremor and Parkinsons disease, DBS could be the newest answer to treating debilitating psychological disorders as well. It may be surprising at first that one procedure could harness electricity in treating both depression and bi28 THE TRIPLE HELIX Fall 2011
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or bipolar disorder, only 56.4 percent actively seek and receive any form of health service for their illnesses (5). Then, merely 21.6 percent of those seeking help obtain at least the minimally adequate amount of treatment (5). Considering lack of motivationa common symptom of depressionand, especially, the perpetuating stigma surrounding mental illness, its no wonder so few utilize services until their disorders become so entrenched as to inhibit normal functioning. neurochemical mechanisms to alleviate depressive symptoms. Certain brain structures mediate release and regulation of these neurochemicals; for instance, the ventral capsule regulates reward processes while the nucleus accumbens is implicated in motivational behavior (12). Electrical pulses control these areas activities, leading to measured and appropriate neurochemical release. Of particular interest is whether DBS could help those with treatment-resistant mood disorders; for patients unable to respond to traditional treatments, DBS may offer hope. Difficulties in Assessment and Treatment Detractors are quick to question DBSs ultimate efficacy. Problems with current mental health management could However, in recent years, several promising studies show arguably stem from minimal advances in treatment options benefits of using DBS for mood disorders. In 2005, Schlaepfer since the introduction of ECT in the late 1930s (9). Since then, et al. studied stimulation of the nucleus accumbens, which is research in the psychological and biological foundations of the brains reward center, in patients with treatment-resistant mood disorders has progressed by occasional leaps and bounds, mood disorders (12). Surgeons administered the DBS procedure such as cognitive therapys rise in the 1960s and Prozacs to three patients of varying ages, all of whom subsequently grand unveiling in 1988. Much is left to be done in the mental registered immediate, acute improvements on rating scales for health field as there is yet plenty of room for safer and more depressive signs. Another investigation by Mayberg et al. in effective treatments. 2009 followed the progress of patients with different degrees First, it is challenging to of depression and bipolar discharacterize mood disorders order for up to several years afgiven their varied causes. Doctors ter electrode implants in areas Much is left to be done in cannot simply diagnose and prelike the ventral capsule of the scribe a set of proven and specific limbic-cortical system, which is the mental health field as procedures for bipolar disorder or heavily involved in regulating there is yet plenty of room depression. A variety of contributand monitoring emotional states ing factors combines to perpetu(13). As in the earlier experiment, for safer and more effective ate these psychological conditions patients from the 2009 study treatments. on an individual basis. Triggers also reported significant lifts in for depressive episodes include mood and motivation. Follow-up everything from life-uprooting consultations showed sustained eventsdivorce, movingto the seemingly triviala bad day, improvement in symptoms or even remission in 66 percent of passing insults. In addition, some people may have a genetic the subjects (13). In addition to subjective analysis, patients predisposition to develop psychiatric ailments, particularly underwent PET imaging, and the scans showed increased bipolar disorder (10). Depression could also involve dysfunc- and sustained brain activity in targeted areas and decreased tional cortical structures, such as the hypothalamic-pituitary- activity in areas, such as the ventrolateral prefrontal cortex, adrenal (HPA) axis, which orchestrates the bodys hormonal that were metabolically overactive in untreated people with stress response. Ultimately, whether mood disorders actually depression (12, 13). With hopes of establishing DBS as a cliniarise and become debilitating problems depends heavily on cal tool for mood disorders, researchers aim to continue the individual predispositions and circumstances. protocol and to replicate these positive results within larger However, while mood disorders certainly stem from a mix subject populations. of external and internal factors, these patients all have neuro- Reproduced From [14] chemical imbalances that create negative feelings of moodiness and hopelessness. After all, the important role chemicals play in creating characteristic signs of mood disorders is why medications targeting serotonin and dopamine are often prescribed. One such medication, Prozac, aims to alleviate symptoms of mood disorders by increasing serotonins active time in the synapse and availability for receptor sites (11). Its effect is critical, since serotonin is the integral neurotransmitter that regulates mood along with dopamine and norepinephrine. Yet, when patients develop tolerance to over-prescribed antidepressants and when extensive therapy fails to elicit any results, DBS presently stands as the most viable alternative. The Aims of DBS Recent research illuminates how DBS acts upon widespread

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Reproduced From [15]

Conclusion Ultimately, DBS should be championed as a novel, viable treatment option and not as a complete cure for any disorderat least not yet. When surgeons use DBS to treat Parkinsons disease patients, the patients movement disorders are not eradicated, but they no longer experience symptoms and so enjoy a much-improved quality of life. Thus, what DBS ultimately seeks to accomplish is not fixing the initial causes for depression or bipolar disorder; the procedure cannot truly reverse damage already done. Instead, DBS helps patients by alleviating disabling symptoms and offering significant relief. DBS is an alternative option for mood disorder treatment if psychotherapy fails to work, and unlike traditional methods, DBS has more well-defined targets and more sustained effects with its battery-controlled and adjustable microelectrodes. Still, more research on long-term effects needs to be done,
References
1. Deep Brain Stimulation Interview [video]. Edison, NJ: NJ News; 2009. 1 video clip: 3 min., sound, color. Available from: http://www.youtube.com/ watch?v=qLWIiKIzXXQ. 2. The Parkinsons Appeal for Deep Brain Stimulation. History of Deep Brain Stimulation [homepage on the Internet]. London, UK: The Parkinsons Appeal for Deep Brain Stimulation; c2001-2011 [cited 2011 Feb 12]. Available from: http://www. parkinsonsappeal.com/dbs/dbshistory.html/ 3. Aziz T, Yianni J. Surgical Treatment of Parkinsons Disease. ACNR [serial on the Internet]. 2003 Jan-Feb; [cited 2011 Mar 10]; 2 (6): [2 pages]. Available from: http:// www.acnr.co.uk/pdfs/volume2issue6/v2i6specfeature.pdf 4. Mental Health: A Report of the Surgeon General. Mood Disorders [homepage on the Internet]. SAMHSA; [cited 2011 Mar 14]. Available from: http://www. surgeongeneral.gov/library/mentalhealth/chapter4/sec3.html. 5. National Institute of Mental Health. Any Mood Disorders Among Adults [homepage on the Internet]. NIMH; [updated 2010 Jul 29; cited 2011 Mar 10]. Available from: http://www.nimh.nih.gov/statistics/1ANYMOODDIS_ADULT.shtml. 6. Ustun T. Commentaries: The Global Burden of Mental Disorders. American Journal of Public Health [serial on the Internet]. Sep 1999; [cited 30 Mar 2011]; 89 (9): [about three pages]. Available at: http://ajph.aphapublications.org/cgi/ reprint/89/9/1315.pdf. 7. Merck. Treatment of Mental Illness: Overview [homepage on the Internet]. Whitehouse, NJ: Merck & Co., Inc; c2009-2010 [cited 2011 Feb 12]. Available from: http://www.merckmanuals.com/home/sec07/ch098/ch098d.html. 8. Healthy Place: Americas Mental Health Channel. Too Many Quit Taking Antidepressants Too Soon [homepage on the Internet]. HealthyPlace.com; c20002011; [cited 2011 Mar 6]. Available from: http://www.healthyplace.com/depression/

even though results from many studies in the past decade show great promise for the role of DBS in mood disorder treatment. The main drawback involves concerns over its invasiveness, since surgeons must insert microelectrodes to reach the target areas. Perhaps, noninvasive and even more specialized techniques will emerge in the future of mental health research, but, until then, any progress is good progress in an area with so few advances and so many ramifications for patients. As Dr. Linda Carpenterwho studies various forms of mood disorder treatmentsstates during a Brown University lecture (March 2011), mental health research is an ever-evolving field with much still left to be discovered. Adela Wu is a junior double-concentrator in Neuroscience and English at Brown University.
antidepressants/too-many-quit-taking-antidepressants-too-soon/menu-id-68. 9. Hasey G. Canadian Psychiatric Association. Transcranial Magnetic Stimulation for the Treatment of Mood Disorder: A Possible Alternative to ECT [homepage on the Internet]. Hamilton, Canada: Canadian Psychiatric Association; [cited 2011 Mar 13]. Availablefrom: http://ww1.cpa-apc.org/Publications/Archives/Bulletin/2002/august/ haseyEn.asp. 10. World Health Organization. Conquering Depression: Some Facts and Figures [homepage on the Internet]. WHO Regional Office for South-East Asia; [updated 2011; cited 20 11 Mar 13]. Available from: http://www.searo.who.int/en/Section1174/ Section1199/Section1567/Section1826_8101.htm. 11. Schimelpfining N. The Chemistry of Depression. About.com [webpage on the Internet]. 29 Nov 2006; [cited 30 Mar 2011]; [about 3 screens]. Available from: http:// depression.about.com/cs/brainchem101/a/brainchemistry.htm. 12. Schlaepfer T, Cohen M, Frick C, Kosel M, Brodesser D, Axmacher N, et. al. Deep Brain Stimulation to Reward Circuitry Alleviates Anhedonia in Refractory Major Depression. Neuropsychopharmacology [serial on the Internet]. 2008; [cited 2011 Mar 13]; 33: 368-377 [about 9 pages]. Available from: http://www.nature.com/npp/ journal/v33/n2/full/1301408a.html. 13. Mayberg HS, Lozano AM, Voon V, McNeely H, Seminowicz D, Hamani C, et. al. Deep Brain Stimulation for Treatment-Resistant Depression. Neuron [serial online]. 2005 March 3; [cited 2011 Mar 13]; 45 (5): 651-660 [about 9 pages]. Available from: http://www.cell.com/neuron/retrieve/pii/S089662730500156X. 14. http://www.westboylston.com/Pages/WBoylstonMA_Healthy/02231076000F8513.1/j0401561.jpg 15.Melinda Wenner. Deep Brain Stimulation Might Soon Treat a Number of Brain Disorders [image on the Internet]. PBS: Wired Science. [Cited 22 April 2011]. Available at: http://www.pbs.org/kcet/wiredscience/assets/story/86.jpg.

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Supermax Me? The Costs and Benefits of Long-Term Solitary Confinement


Doni Bloomfield
he United States has the largest prison population in indefinitely. These violent events inaugurated the Federal the world, bar none. Its prisons have had to confront a Penitentiary at Marion as the first supermaximum prison. quintupling of prisoners per capita from 1975 to 2000, Since that time, supermaxes have grown tremendously with no commensurate increase in budget [1]. With prisons both in number and size. Starting with Marion and its 435 overcrowded and increasingly dominated by gangs, violence prisoners in 1983, the number of supermaximums had swelled has entered prisons as never before. To fight this surge, war- to a purported 57 by 2006, hosting as many as 20,000 prisoners dens have been turning to one tool they consider vital: the [5]. Supermaxes are distributed extremely unevenly and used supermaximum security prison. Designed to house the worst at vastly different rates; Western states house 2.7% of their of the worst, these prisons place inmates in complete solitary prisoners in supermaxes in contrast to the Midwests 1.1%, and confinement, kept to their small whereas only .3% of New Jerseys cells 23 out of 24 hours a day with prisoners are in supermaxes, a almost no out-of-cell amenities full 12% of Mississippis prison...long-term solitary [2]. Although corrections officers ers reside in a supermax [5]. It and numerous politicians defend should be noted that although confinement has serious these prisons as necessary meathese figures are impressive, psychological costs on prisoners sures to crack down on violence they should be taken with a and restrain dangerous crimigrain of salt. In a 2008 paper, without clear commensurate nals, critics argue that solitary three criminologists attempted benefits to society confinement is an inhumane to trace these oft-cited statistics practice that severely damages particularly the aforementioned the mental health of those forced 20,000 supermax prisoners nato endure it and offers no retionwide and discovered dozduced violence in return. Given the evidence amassed over the ens of discrepancies among the different sources, stemming past 40 years on the effects of solitary confinement in general from confusion about definitions and unreliability of state and the supermax in particular, the conclusions, though they correctional agencies [6]. The 20,000 prisoners supposedly cannot be final due to the methodological weaknesses of the in solitary confinement, for example, included some states literature, support most of the claims made by solitary confine- supermax capacity, while for other states it noted actual prisments critics. Data largely indicate that long-term isolation oner numbers. The criminologists questioned even such basic is damaging to mental health. Moreover, empirical evidence facts as the number of states that possessed supermaxes, as suggests that supermaxes do not in fact reduce inmate-on- they could only identify 25 states with such institutions, deinmate violence and have an unclear effect on inmate assaults spite others reporting as many as 40 states with supermaxes on staff [3]. In short, long-term solitary confinement has serious [6]. I mentioned these numbers earlier because they are very psychological costs on prisoners without clear commensurate frequently cited in academic papers regarding this subject, benefits to society. but these are major discrepancies that must be resolved in In the midst of Americas crime surge of the mid-to- any investigation of this phenomenon. late 20th century, the Federal Penitentiary at Marion, Illinois Although it is difficult to point to exact figures, evidence seemed to represent many of the nations woes. Opening as a points to a major increase in the use of supermaxes as corstate-of-the-art prison in 1963, it lived through the rising tide rectional institutions. What, then, defines a supermaximum of crime of the 60s and 70s as new, powerful gangs swept into prison? The definitions differ, but most experts agree upon the prison system [4]. At Marion, however, the worst was yet some basic criteria. Supermaxes are designed to act as a pun to come. Between February of 1980 and October 1983, prison- ishment to prisoners who have been especially disruptive and ers murdered 25 of their fellow inmates and in the middle of violent in the general prison: as a prison-within-a-prison. To that October, 2 guards were killed in separate incidents on the that end, supermaxes house prisoners in small cells roughly same day [4, 5]. In response, the prison was put into lockdown, 7 by 12 feet, and often windowless for about 23 hours a day with every inmate confined to his cell throughout the day. [1]. Prisoners are usually monitored by camera and are as With some minor adjustments, this lockdown has continued socially isolated as possible: amenities are passed through

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the cell door and any form of personal contact is kept to the absolute minimum [7]. The occupants of these cells are, extrapolating from the representative supermax population in Washington state, young, violent offenders who were given long sentences and had been more violent than average in prison [1]. 23% of national supermax inmates are mentally ill, as compared to 11% of the general prison population [6]. In short, supermaxes take the most dangerous, unstable and violent inmates the worst of the worst and try to keep them as isolated from others as possible. The theoretical underpinnings of this system are simple. Wardens believe, and are backed by good evidence, that a large proportion of crimes in prison are committed by a small number of criminals [3]. Thus, the logic goes, these criminals should be removed from the general population and placed under a much stronger lock-and-key [1]. Though seemingly intuitive, this argument is not necessarily sound. Putting dangerous prisoners in solitary confinement might seem both to deter violence and serve as a means of segregation, but many prisoners actually seek solitary as a means of escaping penitentiary violence [2]. Indeed, Ohio has a waiting list of prisoners petitioning to get into its supermax; in other states, this might simply involve committing an assault to get on the Other benefits one might hope for from solitary are also absent. Maximum-security prisons, which are presumed to prompt lower repeat offense rates, do not provide such benefits, at least compared to prisons that are merely high security [8]. In line with this evidence, a randomly selected group from a federal supermax exhibited a repeat offense rate of 50% among its inmates, as compared to a 36.6% rate for a contemporary maximum-security prison. Evidently, in spite of the increased harshness of the supermax, prisoners left its walls more likely to repeat criminal behavior than those in lowersecurity prisons [4]. This suggests that supermaxes are, in all likelihood, not deterring prisoners from committing crimes in the future. It seems that the benefits from supermaxes are slim; if they exist, they are primarily found in decreases in prisoner assaults on staff. The price supermax prisoners pay for these slim benefits can be extreme. Craig Haney, an expert on the effects of confinement, posits that [t]here are few, if any, forms of imprisonment that appear to produce so much psychological trauma, as long-term solitary confinement [7]. The anecdotal evidence is consistent, as prisoners of war from around the globe attest. Terry Anderson, an AP journalist captured by

...despite strong claims on behalf of the literature on solitary confinement, most scientific evidence that we possess is sufficiently flawed as to render it almost inconclusive
Hezbollah in Lebanon, describes his thoughts at the time of his solitary confinement: The mind is a blank. Theres nothing there, just a formless, black misery. My minds gone dead. [9] Likewise, John McCain, a POW for 5 years in Vietnam, argues that solitary crushes your spirit and weakens your resistance more effectively than any other form of mistreatment. [9] Indeed, a large literature of case studies dating from the 19th century presents serious negative mental health effects of long term solitary confinement, among them insanity, loss of sensitivity to stimuli, and inability to cope with social situations [5]. Studies attempting to more rigorously quantify these effects, however, are either inconclusive or riddled with methodological errors. For example, studies in the mid-to-late 20th century relied on comparing prisoners in supermaxes to those in the general population. When it was found that over 50% of prisoners in long term solitary experience symptoms of major mental illnesses experienced by only 20% or less of the general prison population, researchers concluded that solitary confinement caused this extreme disparity [7]. This

Reproduced from [14]

supermax fast-track [1]. Moreover, segregation might not defray violence, as other prisoners will often step into the shoes of those who have left or step up disruptions in retaliation [3]. Indeed, there is little evidence to suggest that segregating extreme offenders actually reduces violence. The best study available, which examined statewide prisoner violence before and after the introduction of supermax prisons in 3 states (and a 4th control state), found that supermaxes had no effect on inmate-on-inmate assaults and had contradictory effects on inmate-on-staff assaults, decreasing them permanently in one state and increasing them temporarily in another [3].

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is mistaking correlation for causation, however, and more recent studies have indeed found that this disparity exists between those at the beginning of their solitary terms and the general population, suggesting that selection bias the fact that those with mental illness are more likely to go to solitary confinement in the first place is causing this disparity [10]. Even studies that are more methodologically sound yield contradictory results. One Danish study found that after 4 weeks, pretrial inmates in solitarily confinement were 20 times more likely to be admitted to the hospital for psychiatric care than those assigned to the general prison population [7]. In a 2010 study, a group of criminologists found that across all the institutions in their investigation, greater time in solitary correlated with the prisoner subsequently acting more inhibited, anxious, cautious, dissatisfied and showing more depression and hostility than a control inmate [11]. However, a Canadian study that examined inmates in solitary confinement for 60 days found no deterioration of mental health over the course of the solitude [12]. Likewise, a recent yearlong study in Colorados supermax found that a year of solitary confinement had no negative effects on mental health, even for inmates with a history of mental illness [10]. But these studies have their own flaws. The Canadian study relied entirely on reports of subjects who were informed that their results might not remain even individually confidential, rendering their accuracy open to question [5]. In the case of the Colorado study, attempts to validate the self-reported data using external sources was miniscule, and that non-self-reported data that was reliable showed much higher rates of emergency psychiatric contact among those in solitary confinement than those in the general population control group [13]. Unfortunately, despite strong claims on behalf of the literature on solitary confinement, most scientific evidence that we possess is sufficiently flawed as to render it inconclusive. Ultimately, given the apparent major mental health effects on even psychologically sound individuals, it appears that solitary confinement is potentially severely psychological damaging even if this is not obvious in all studies to date. With major, if as yet not fully understood, negative health effects, and few benefits, long term solitary confinement seems to fail a cost-benefit analysis. Supermaxes fail as an effective measure even by a more crude form of analysis: Supermax inmates are more than twice as expensive to maintain on an annual basis as an inmate in a maximum security prison, and without commensurate monetary savings in violence prevented.1 At a time when prisons are cutting budgets and crowding penitentiaries, and at a time when the United States needs to recover its reputation as a country that treats its prisoners humanely, the United States can ill afford to bear the major costs of solitary confinement in exchange for such slim, insubstantial benefits. Doni Bloomfield is a sophomore studying economics and history at the University of Chicago.
Reproduced from [15]

References
1. Pizarro, JM, Narag, RE. Supermax Prisons: What We Know, What We Do Not Know, and Where We are Going. Prison Journal. 2008 88(1) 23-42 2. Mears, DP, Reisig, MD. The theory and practice of supermax prisons. Punishment & Society 2006 8(1) 33-57 3. Briggs, CS, Sundt JL, Castellano, TC. The Effect of Supermaximum Security Prisons on Aggregate Levels of Institutional Violence. Criminology 2003 41(4) 1341-1376 4. Ward, DA, Werlich, TG. Alcatraz and Marion: Evaluation super-maximum custody. Punishment & Society 2003 5(1) 53-75 5. Smith, PS. The Effects of Solitary Confinement on Prison Inmates: A Brief History and Review of the Literature. Crime and Justice 2006 34(1) 441-528 6. Alexandra, N, Freilich, JD, Mellow, J. The Elusive Data on Supermax Confinement. Prison Journal 2008 88(1) 69-93 7. Haney, C. Mental Health Issues in Long-Term Solitary and Supermax Confinement. Crime & Delinquency 2003 49(1) 124-156 8. Chen, MK, Shapiro, JM. Do Harsher Prison Conditions Reduce Recidivism? A Discontinuity-based Approach. Am Law Econ Rev 2007 9(1) 1-29 9. Gawande, A. Hellhole: The United States holds tens of thousands of inmates in long-term solitary confinement. Is this torture? The New Yorker 10. OKeefe, ML, Klebe, KJ, Stucker, A, Sturm, K, Leggett, W. One Year Long Longitudinal Study of the Psychological Effects of Administrative Segregation 11. Reactions and Attributes of Prisoners in Solitary, Ntnl Inst of Justice. 2010 Available from: http://www.ncjrs.gov/pdffiles1/nij/grants/232973.pdf 12. Zinger, I, Wichmann, C, Andrews, DA. The psychological effects of 60 days in administrative segregation. Canadian Jour of Criminology 2001 47-83 13. Grassian, S. Fatal Flaws in the Colorado Solitary Confinement Study. Published on Solitary Watch 2010 Available from: http://solitarywatch.com/2010/11/15/fatalflaws-in-the-colorado-solitary-confinement-study/ 14. http://www.americaslibrary.gov/assets/jb/wwii/jb_wwii_rock_3_e.jpg 15. http://www.defense.gov/DODCMSShare/NewsStoryPhoto/200512/20051217163542_5prison1.jpg

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Ethical Issues in Cancer Clinical Trials


Darius Borhan

atricia is a 63 year old woman from Baltimore. She has worked as a lawyer for more than 30 years, only recently retiring to spend more time with her family. After making several visits to her family physician complaining of upper abdominal pain, she was eventually referred to the oncology center of the hospital after doctors discovered that she had lost a significant amount of weight over the past 2 months. Patricia was put through the full battery of tests and eventually received the diagnosis of pancreatic cancer from her consultant oncologist. Pancreatic cancer has one of the poorest prognoses amongst all cancers. It ranks fourth among cancer-related deaths in the USA, with a 5-year survival rate of <5% [4]. Faced with the grim reality that she likely only has months to live, Patricia chooses to be treated at a large academic medical center, where she will have access to the latest clinical trials as well as a high standard of care. Patricia has several treatment options; the current gold standard treatment is a chemotherapy drug known as gemcitabine [4]. Another option Patricia has is to enter onto a clinical trial with the hope that she will gain a few more months to spend with her family. As Patricias oncologist, Dr. Z must gather the latest info regarding the trials being run at the hospital, and thoroughly explain them to his patient. At the time

(2005), Patricias oncologist had access to recently published data from a phase II study that combined Avastin (a novel new anti-cancer drug) with gemcitabine. The results from this trial were encouraging, producing an increase in median survival as compared to standard gemcitabine treatment [5]. With this in mind, Dr Z informs Patricia that she is eligible to enroll into a new phase III study which will randomly allocate her to receive either the new drug or gemcitabine. With this information in mind, which treatment will Patricia and her doctor choose? Although the patient and situation described above are fictional, the clinical trial is real and the ethical dilemma is clear: Does Dr. Z have enough evidence to conclude that Avastin really works better than gemcitabine? Current Status of Clinical Trials All newly developed cancer treatments are evaluated using clinical trials, and no drug can be licensed for routine use until it has passed an extensive series of clinical studies. Traditionally, these are classified into four general groups: Phase I (safety and metabolism; including first in man studies), phase II (preliminary evaluation of efficacy), phase III (randomized1, blinded2, studies to compare with best standard therapy for more definitive evaluation of efficacy), and phase IV (evaluation of safety and efficacy after a drug is licensed). Reproduced from [10] In early phase trials (I and II), traditional outcome measures include the occurrence of serious adverse events in order to define a safe dose and schedule on which to give a particular treatment. Another aim of phase II trials is to give an initial picture regarding efficacy. Late phase trials tend to use long-term endpoints such as overall survival, or progression-free survival. There is an increasing use of novel biomarker and imaging endpoints, but there is also a need to record outcomes that indicate the experiences of patients. Financing these trials is either directly through a pharmaceutical company, or via an external funding body (i.e. NIH). The funding source plays

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a pivotal role in how the trial is set up, run, and monitored. All patients that enter into a clinical trial must provide informed consent. This is a contentious topic which has been debated in the bioethics community, as the line between what does and does not constitute informed consent can be classified as blurred at best [1]. Once patients are enrolled onto a trial, it is implied that they receive treatment of the highest standard, as trial patients are examined and monitored far more closely than patients undergoing traditional treatment. For example, they receive a greater number of MRI/CT scans, blood tests, physical examinations, etc. The issue of blinding and randomization in cancer trials represents one of the key ethical dilemmas clinical investigators are faced with. The currently accepted ideology regarding randomization is the following: it is ethical, as long as equipoise exists [2]. Equipoise refers to the relative uncertainty amongst the medical community regarding the efficacy of treatment A versus treatment B. According to world-renowned bioethicist Benjamin Freedman, clinical equipoise exists when there is no consensus within the expert clinical community about the comparative merits of the alternatives to be tested [3]. Based on this logic; it is ethical to put cancer patients into double-blind, randomized studies to determine if a new drug is indeed superior to what is currently offered. This is where the water turns murky, however, as there are a number of critics of using equipoise as a basis for conducting randomized trials, each with their own set of complaints. Miller and colleagues point out an interesting paradox, stating: it is ironic that under the equipoise standard the permissibility of undertaking randomized clinical trials, which are intended to provide the most rigorous basis for clinical evidence, rests on mere expert opinion about the relative value of treatment options [2]. study. She tolerated the treatment fairly well during the first two months, until she had a sudden bout of pneumonitis that required her to be admitted to the hospital. After a grueling seven weeks in the ICU, Patricia succumbed to her disease and passed away, a mere 4 months after starting the clinical trial. This sad scenario is unfortunately far too common in the cancer world, and it underscores several important points that are relevant in bioethics. Firstly, it is safe to assume that Dr. Z acted ethically in the Patricia case, as he had in his hands a promising trial result that could have offered Patricia a few more months of life. Additionally, when we look retrospectively at the results of the trial Patricia was on, we realize that her case was unfortunately not a rare one, even amongst patients who got Avastin. The trial, published in the Journal of Clinical Oncology in 2010, reported no survival difference between patients who received Avastin/gemcitabine versus those who received gemcitabine alone [6]. It would certainly be unfair to blame Dr. Z in this case, as this is a common pitfall in oncology. Phase II results, which often look promising, can fail miserably when moved to the larger phase III arena, as was the case here.

Case 2: Gregory (November 2010) Gregory is a 53 year old male living in Florida. Gregory visits his family physician after unsuccessfully trying to resolve his lower back pain. He is subsequently referred to a GI surgeon. After colonoscopy, the surgeon finds advanced cancer present in his large bowel, with signs of metastatic spread to the liver. This result is confirmed with a liver biopsy, and Gregorys oncologist, Dr. Y, gives him the diagnosis of stage IV colorectal cancer. In 2009, there were 57,000 deaths from colorectal cancer in the United States, making it the second leading cause of cancer death. Stage IV colorectal cancer constitutes the most What Happened to Patricia? advanced form of the disease, indicating distant organ meThe main ethical dilemma Dr. Z is faced with in Patricias tastasis beyond the bowel region. Five year survival rates are scenario surrounds the concept of equipoise. Does Dr. Z have <15% in patients with this advanced disease state [7]. Treatenough evidence to conclude that ment options for patients with Avastin really works better than colon cancer that has spread to gemcitabine? If so, it would be the liver are limited. Since the deemed unethical for him to have The currently accepted ideology disease is discovered at such a Patricia randomly enter a trial late stage, surgery is usually not regarding randomization is the in which she could be denied an option. Standard of care at the the better therapeutic option time for first-line treatment was following: it is ethical, as long [2]. This is a difficult question a combination of chemotherapy as equipoise exists to answer; one must remember drugs, collectively known by the that Dr. Z is basing his clinical acronyms FOLFIRI or FOLFOX trial recommendation on a Phase [8]. Where possible, patients II trial, which usually does not also received genetic screening provide a definitive picture of efficacy. Therefore, one can for presence of specific mutations which could predict their safely assume that Patricias oncologist really isnt sure which response to therapy with certain novel anti-cancer agents. is the better treatment, hence it is ethical for him to suggest These markers included EGFR and k-ras [7]. Patricia enter this trial based on the principle of equipoise. As Dr. Y prepares for his appointment with Gregory and Dr. Z told Patricia to go home for a week, talk things over his wife, he flicks through a paper on a recently published with her family, and return to his clinic with her decision. clinical trial, reporting data for the use of a newer anti-cancer After careful consideration, Patricia chose to enter the trial, drug, Erbitux, as first-line treatment in combination with and by pure chance, was allocated to the Avastin arm of the chemotherapy for metastatic colorectal cancer. The drug has

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already been approved for use in patients by the US Food and Drug Administration (FDA). The data from the phase III study, which was not blinded and was conducted in various European hospitals, suggests a modest benefit for patients receiving Erbitux in addition to conventional chemotherapy [9]. Looking over Gregorys laboratory results, he sees that his values for the genetic markers positively correlate with those patients who tend to respond to Erbitux treatment. Dr. Y is also aware of an actively recruiting, international, doubleblind phase III study, which will look to further confirm the positive results seen in the European study. The clinical trial is funded by a major pharmaceutical company. Dr. Y enters Gregorys room, and presents some treatment options to him, including the clinical trial. After 20 minutes have passed, Gregory decides to enroll in the study, where he will be randomly allocated to receive the new drug Erbitux, with chemotherapy, or the current standard of care (FOLFOX or FOLFIRI). One of the major considerations that factors into Gregorys decision is his health insurance plan. Unfortunately for Gregory, his insurance will only approve for him to receive Erbitux if he is deemed to have failed first line standard chemotherapy. Therefore, his only chance of receiving the new drug is by entering onto a clinical trial. Ethical Issues in Case 2 The issue of insurance is complex and constrains Dr. Y slightly. As Gregorys physician, he is unable to prescribe Erbitux because he knows that Gregory will not be able to pay for the treatment, which costs thousands of dollars. Based on this knowledge, the only way Dr. Y can give his patient a chance to receive this new treatment is by entering him onto a clinical trial, where Dr. Y will have considerably less control over the course of Gregorys treatment. There is also no guarantee that Gregory will receive the study drug (because of randomization). The companies providing the drugs in these studies often exercise their right to significantly influence the way the trials are run, including choosing how often to perform certain assessments. It is interesting to point out that, had this case occurred in the UK, Gregory would not have the option of receiving Erbitux unless he enrolled onto a clinical trial. The UK National Institute for Clinical Excellence (NICE) has only approved Erbitux to be used after patients have failed first-line chemotherapy, following a similar logic as Gregorys American health insurance provider. What Happened? After enrolling onto the phase III trial, Gregory was randomReferences
1. Jefford M, Moore R. Improvement in informed consent and the quality of consent documents. Lancet Oncology 2008; 9: 485-93 2. Miller FG, Joffe S. Equipoise and the dilemma of randomized clinical trials. N Engl J Med 2011; 364:476-80. 3. Freedman B. Equipoise and the ethics of clinical research.N Engl J Med 1987; 317:141-5. 4. Hidalgo M. Pancreatic Cancer.N Engl J Med 2010; 362:1605-1617. 5. Kindler HL, Friberg G, Singh DA, et al. Phase II trial of bevacizumab plus gemcitabine in patients with advanced pancreatic cancer.J ClinOnc 2005; 31: 8033-40. 6. Kindler HL, Niedzwiecki D, Hollis D, et al. Gemcitabine plus bevacizumab compared with gemcitabine plus placebo in patients with advanced pancreatic cancer: phase III trial of the Cancer and Leukemia Group B (CALGB 80303). J ClinOnc2010; 28: 3617-22. 7. Markowitz SD, Bertagnolli MM. Molecular basis of colorectal cancer. N Engl J Med 2010; 361: 2449-60. 8. Jonker DJ, OCallaghan CJ, et al. Cetuximab for the treatment of colorectal cancer.N Engl J Med 2007; 357: 2040-8. 9. Van Cutsem E, Kohne CH, et al. Cetuximab and chemotherapy as initial treatment for metastatic colorectal cancer.N Engl J Med 2010; 360: 1408-17. 10. https://intramural.nhlbi.nih.gov/Offices/OCD/CSRP/PublishingImages/ MRIroomscene.jpg

ized to the control arm, meaning he only received the standard chemotherapy for metastatic colorectal cancer, though neither he nor Dr. Y were allowed to know which treatment he was receiving. As Gregory is fairly young, he tolerated the FOLFIRI treatment well, and his scans showed some signs of cancer shrinkage after nine months of treatment. Unfortunately, his latest CT scan taken after 1 year of treatment showed that his cancer had progressed beyond its initial level. At this point Gregorys insurance determined he was eligible to receive Erbitux, and he was immediately prescribed some by Dr. Y. After only 2 months of treatment with this new agent, Gregory was hospitalized feeling severely ill, and ultimately ended up in the ICU. After remaining there for a period of 3 weeks, Gregory passed away at the age of 54. Once he signed Gregorys end of life paperwork, Dr. Y began to feel very remorseful for his patient and his family, regretting that he was not able to provide Gregory with a few more months of life. Ironically, he was slated to see another colorectal cancer patient that day, a 66 year old gentleman who he had been treating for over a year. Unlike Gregory, this patient was over 65, meaning he was eligible for the US government sponsored MEDICARE health insurance plan. As a result, the 66 year old gentleman had been receiving chemotherapy and Erbitux treatment at no cost for over a year, and showed significant disease regression. As Dr. Y walked out of his appointment with this patient, he couldnt help but speculate what might have happened if Gregory was able to receive the same treatment. Conclusion In the case studies presented, there are two major ethical dilemmas. The case of Patricia represents an internal issue, where a physician has to weigh different treatment options and determine the best course to follow based on the information available to him. Gregorys case, however, is an example of an external dilemma, where the doctor is essentially powerless due to the health insurance conundrum and the inherent uncertainty associated with randomization. The ethical issues presented here are highly significant, and underscore the importance of finding new ways to tackle these problems in order to minimize their impact on patient-doctor decision making. Darius Borhan is a student at UCSD.

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Mammography Screening Guidelines: A Lesson Yet to Be Learned


Sandra Wei Hwang

s of March 2011, one in eight women in the U.S. will develop invasive breast cancer over the course of her lifetime [1]. The Centers for Disease Control cites regular mammography as the most effective way to diagnose breast cancer in its early stages [2]. Annual mammography screening for women over 50 years of age is consistently endorsed by the health community; routine screening for women in their 40s, however, has been a contentious issue since the 1970s. This article will address the release of the 2009 U.S. Preventive Service Task Force (USPSTF) guidelines regarding mammography screening in women in their 40s, the surrounding controversy during the Obama administration, and its absolute resemblance to a former case during the Clinton era. In light of unending debate, juxtaposition of these cases allows for identification of a crucial flaw with enormous potential for improvement: the communication gap between science, policy, and the public. Since 2002, the USPSTF has recommended annual to biennial screening mammography for women beginning at age 40 [3]. As a Congressionally mandated panel of non-federal experts, all of whom are primary care providers, the USPSTF conducts scientific evidence reviews of clinical preventive health care services and delivers recommendation statements accordingly [3]. Its guidelines have reinforced years of communicating the importance of routine screening as a preventive health measure for women. In November 2009, however, the USPSTF released a recommendation statement which took the health community by storm: The decision to start regular, biennial screening mammography before the age of 50 years should be an individual one and take patient context into account, including the patients values regarding specific benefits and harms [3]. At this time, the historical context of the time must be noted. President Obama began his term in January of 2009. Accompanying the onset of the administration was its highly cost-conscious health care reform plan, which sought to reallocate money to preventive services while reducing wasteful services.
2011, The Triple Helix, Inc. All rights reserved.

Before discussing the political chaos that followed the release of these guidelines, it is crucial to establish that the approach taken by the USPSTF is scientific and evidence-based. In its systematic evaluation of screening mammography in women in their 40s, the USPSTF uses an analytical framework to weigh benefits against harms. Primary benefits have been identified as decreased breast cancer mortality, morbidity, and total mortality [3]. A heavily publicized study by Nelson et. al indicates that the number needed to invite for screening (over several rounds of screening and at least 11 years of follow-up) to prevent one breast cancer death in women aged 39-49 was 1,904, compared with 1,339 in women aged 50-59 [4]. Psychological harms such as increased patient anxiety, distress, and inconvenience due to false-positive results, unnecessary biopsies, and overdiagnosis have been identified as primary harms. Using data representing a cohort of regularly screened women, the USPSTF estimates a 56% risk of false positive testing after 10 mammograms in women between 40 and 49 years of ages. When accounting for all ages, estimated risk is much lower, at 21-49% Reproduced from [2] [5]. Although women in their 40s and 50s benefit equally from routine screening mammography, women in their 40s experience greater harms, reads the 2009 report. These presumably well-intentioned guidelines, however, were far from well-received. Suspicion and Fear: the Publics Response The universal reaction across the country since we learned of these revised recommendations has been one of outrage, says Dr. Carol Lee, chief of the Breast Imaging Commission for the American College of Radiology (ACR) [6]. Critics of the guidelines appear to emphasize two suspicions: (1) an ulterior motive to cut costs and (2) lack of prioritized value of individual lives. The USPSTF is essentially telling women that mammography at age 40 to 49 saves livesjust not enough of them, claims Dr. Otis Brawley, chief medical officer for the American Cancer Society (ACS) [6]. As two of the most prominent dissenting groups, the ACS and the ACR continue
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to recommend annual screening beginning at age 40 [6]. Outspoken defiance, however, is only part of this picture. A significant portion of the observed chaos can be attributed to fear of the guidelines larger implications. First and foremost
Reproduced from [1]

on this list is policy impactthe concern that legislature and insurance companies will use the guidelines as rationale to cut screening in those under 50. A second facet regards patient protection. Health professionals and organizations fear that the guidelines are a source of confusion among patients and, in women who are already reluctant to take this initiative, may even be utilize as rationale to avoid screening. These guidelines may represent lost opportunities to catch cancer in its earliest stages and increase overall adjusted quality of life years. For many, these fears have already come to fruition. Immediately at the onset of the year 2010, health care reform legislation began to rely heavily on new USPSTF guidelines in order to decide which services should be included in basic benefit packages for all health insurance plans. Additionally, the 2008 Medicare Improvements for Patients and Providers Act (MIPPA) has given the Department of Health and Human Services, private insurers, and state governments the ability to use USPSTF guidelines to establish Medicare coverage as a cost-savings measure [5]. A survey from 2011 by the Avon Foundation for Women indicates that among the states that have used these guidelines to deny coverage for mammograms are California, Florida, Illinois, Michigan, and New York [7]. Simultaneously, there is an increase in women under 50 who are not seeking screening, citing the 2009 guidelines as reason to wait [7]. History Repeats Itself Amidst emotional rhetoric in any heated debate, the larger picture is often overlooked. Many fail to recognize that the 2009 case merely echoes a series events taking place in the Clinton era. The National Conference on Breast Cancer Screening (NCBCS) convened in January of 1997 and, like the USPSTF panel, was designed to resolve scientific controversies and produce an authoritative statement based on an objective

review of the existing body of evidence [8]. The panel concluded that (1) available scientific evidence did not warrant a recommendation of screening for all women in their 40s and (2) a woman in her 40s should make the decision to screen on an individual basis with the guidance of her health care provider [8]. The current reaction to the 2009 USPSTF guidelines is, quite simply, a playback of the political chaos that ensued in 1997. Like the USPSTF update, the NCBCS report indicated that these guidelines were merely a recommendation for informed decision-making [8]. The message taken home by the public, again, did not reflect these intentions. Alongside thousands of health organizations, practicing radiologists, and confused patients, Bernadine Healy, director of the National Institutes of Health (NIH) during the Bush administration, accused the Clinton administration of purposefully using recommendations as rationale for cutting mammography coverage in its new health care reform [8]. Thus, a careful at history indicates that the same recommendation, matched on point with the same political chaos, has repeated itself within a span of 14 years. What have we failed to learn? A Lesson Yet to Be Learned Carol A. Weisman, Ph.D. is a Distinguished Professor of Public Health Sciences at the Pennsylvania State University College of Medicine. Recently appointed to the Institute of Medicine Womens Preventive Service, Dr. Weisman has engaged in discussion of the 2009 guidelines with its supporters, its critics, and members of the USPSTF panel. She has graciously agreed to share her insights on this highly controversial and sensitive topic. Hwang: What are your comments on critics accusations of the guidelines cost-saving motives versus USPSTFs role to allegedly produce recommendations based solely on scientific evidence, especially for critics who represent well-established and highly respected organizations? From Carol Lee, chief of Breast Imaging Commission of the American College of Radiology, for example: I question whether desire to cut costs were a motivating factor in building the guidelines [6]. Dr. Weisman: What many dont understand is that this is a very narrow mandate of the Task Force, in consideration of what services ought to be recommended for routine provision in primary care services. The Task Force is not addressing bigger issues of who should pay for these services. Policy cuts were an unintended consequence of the guidelines. Screening mammography for high risk women should be covered reasonable health plans would cover it. Its missing the understanding that for some women in their 40s, screening is necessary due to individual level of risk. Among the critics, what background are they coming from? Hwang: Mostly radiology and pro-treatment cancer societies

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perhaps some of which who could ultimately benefit from promotion and increased use of services. Dr. Weisman: Right. Always consider the self-interest of the speaker. It happened in the Clinton administration, and its happening now; where self-interest resides, word-twisting, accusatory claims, and hyperbole will always exist. Interestingly enough, its womens health organizations who are siding with the guidelines; these are the people who are truly invested in the health of the patient. Hwang: History has repeated itself almost exactly here; the series of events are the same, with only a difference in the organization and administration. With the number of years that have passed between the Clinton and Obama administrations, what went wrong in both cases? the future, if this situation is to arise yet again? Dr. Weisman: Make sure that the recommendation is extremely clear and released in a way such that the public can understand it. It was a bungling news release from the NIH conference. It was a bungling news release from the Task Force. Ive talked to members of the Task Force panel at the time who admitted that the message could have and should have been delivered more carefully. They say, were scientists. We dont do PR [9]. The story of this ongoing debate does not include a foreseeable end. To address this issue effectively, we must consider what relevant factors can be resolved or improved. Personal and emotional investments easily cloud a larger truth that over the course of 14 years, we have failed to even identify these factors. As suggested by Dr. Weisman, taking a step away from the heat of the debate exposes a vulnerable flaw in both examples: failed communication and public relations between science and the public. According to Weit et. al, many commentators interpreted the report as a recommendation against mammograms in all women, regardless of risk [8]. Through poor delivery of its message, the USPSTF unintentionally instilled confusion in patients, incited suspicion and bold accusations from the health community, and allowed for unintended and often detrimental implications in policy-making. Providing room for both accidental and willful misinterpretation of scientific recommendations clearly leads to vulnerability. This ambiguity in language and lack of explanation of scientific underpinnings fed directly into the chaos we see today. Recognizing this is the first step to preventing another repeat of the 1997 and 2009 cases. This set of events in history leaves us with one moral in particular: development of scientific recommendations without clear delivery of the message to the public is not only counterproductive it is dangerous. In any case in which recommendations are released on the basis of scientific evidence, organizations must invest sufficient time, energy, and gathering of expertise in attending to the relationship between the scientific community, policy-making cohorts, and the public. As evidenced by this controversy, without direct efforts to bridge this communication gap, history will simply repeat itself, time and time again. Sandra Hwang is a sophomore Biology & Society major in the College of Human Ecology at Cornell University. She is concentrating in public health and is interested in health policy.
General Population. 2009 Nov 17; [cited 2011 March 10]. Available from: http://www. acog.org/from_home/Misc/uspstfinterpretation.cfm 6. Dellorto, Danielle. CNN. C2009 [updated 2009 Nov 16; cited 2011 March 10]. Available from: http://articles.cnn.com/2009-11-16/health/mammography. recommendation.changes_1_routine-mammograms-mammography-task-force?_ s=PM:HEALTH 7. ACR, SBI: Avon Survey Reveals Deadly Effects of USPSTF Guidelines. c2009 [updated 2009 Sept 10; cited 2011 March 10]. Available from http://www.acr. org/MainMenuCategories/media_room/FeaturedCategories/PressReleases/ ACRSBIAvonSurvey.aspx 8. Weisman, CS. Breast Cancer Policymaking. Breast Cancer: Society Shapes an Epidemic. 2000 Apr 4; 20(2): 229-232. 9. Weisman, C. Interviewed by: Hwang S. 25 April 2011.

This set of events in history leaves us with one moral in particular: development of scientific recommendations without clear delivery of the message to the public is not only counterproductive it is dangerous
Dr. Weisman: The language in both preliminary reports was perfunctory and did not elaborate on the concept of informed decision making nor the key phrase decide for herself, leaving it open to interpretation by patients, health organizations, and policy-makers. Each was issued through an inept press release at the height of political tension in the current administration, and in both cases, the guidelines fed into fears about health care rationing. The organizations have not learned much about making these recommendations understandable to the public. Hwang: So it comes down to a communication gapa fault in public relations. Considering that we have yet to learn our lesson since the case from the Clinton era, what can we do in
References
1. Breastcancer.org. Facts and Figures about Breast Cancer. 2011 March 3; [updated 2011 March 3; cited 2011 March 1]. Available from: http://www.breastcancer.org/ about_us/press_room/facts_figures.jsp 2. Center for Disease Control and Prevention. Breast Cancer Screening Rates. 2011 June 16; [cited 2011 March 10]. Available from: http://www.cdc.gov/cancer/breast/ statistics/screening.htm 3. U.S. Preventive Services Task Force. Screening for Breast Cancer: recommendation statement. 2009 Nov 10; [cited 2011 March 10]. Available from: http://www. uspreventiveservicestaskforce.org/uspstf09/breastcancer/brcanrs.htm 4. Nelson HD, Tyne K, Naik A, Bougatsos C, Chan B, Nygren P, Humphrey L. Screening for Breast Cancer: Systematic Evidence Review Update for the U.S. Preventive Services Task Force. 2009 Nov 10; 74 (1), 14. 5. American Congress of Obstetricians and Gynecologists. Interpreting the U.S. Preventive Services Task Force Breast Cancer: Screening Recommendations for the

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Sex and Aging: The Social Stigma


Jennifer Sung

any people find the idea of older people having sex disgusting to the point of absurdity. Older peoples sexuality is often exploited for laughs on television or casually mocked. While it is true that sex often becomes more difficult as one gets older, and the level of desire for sex often changes, the need for intimacy often remains constant over a lifetime. This enduring human need passes largely under the radar because of the social stigma against older adults sexual activity and aging.

Condemning older peoples sex implies that their need for physical and emotional intimacy is not valid
It is hard to say whether the social stigma has limited research in these areas, or whether stigma comes in part from the lack of information. It may be both. In either case, the study of older peoples sexuality is a relatively young field in Western medicine, and American sexuality researchers data on that demographic is limited. Results of those studies might have limited relevance to non-heterosexual and nonWestern people [1]. However, it is known that older adults are interested in having sex. In a recent study by Lindau et al., 73% of survey participants who were 57 to 64 years old, 53% who were 65 to 74, and 26% who were 75 to 85 had had sex with someone within a year prior to the study [5]. Although many older people have been sexually active for decades, they do not necessarily have complete and up-to-date information. Many do not know sex education basics, or think that the information no longer applies to them. This is not a small-scale problem. In a recent cross-sectional study of Chicago women ages 58 through 93, nearly 60% of single women who had been sexually active in the previous ten years reported that they had not used a condom; 21% of women with a current sexual partner agreed that condom use is not necessary if you can no longer get pregnant [2]. Older adults sexuality frequently does not get addressed alongside other health issues as they age. Health care providers are reluctant to initiate conversations about sex with them, particularly when a large age difference exists between doctor and patient, although the recent invention of drugs for male erectile dysfunction mean that older men often get more medical attention to sexuality than older women, and the notable human

papillomavirus (HPV) awareness campaign has reached women of all ages in clinical visits, in magazines, and on television [1, 3, 4]. For the most part public health campaigns do not target older adults. If they do, older adults sexual health issues are often treated as disease and degeneracy that needs to be corrected. Undiagnosed or untreated sexual problems can lead to or occur with depression and social withdrawal, and the disapproval of friends and family may make it less likely that older adults will talk about their needs and issues [5]. Assumptions about older adults sexuality affect the care they receive. Like all prejudices, social stigma against older adults sexuality creates problems in many sectors. Efforts to mitigate the medical and social problems frequently focus on advocacy and spreading information. The American Association of Retired Persons (AARP), one of the most prominent membership organizations for people 50 years and up in the United States, advocates for and provides information on aging issues, including sexuality [8]. Pre-dating Medicare, it was founded by Dr. Ethel Percy Andrus in 1958 to advocate for productive aging and obtain insurance for older people, which at the time was virtually nonexistent [8]. It frequently commissions surveys on sexual attitudes and practices among older adults. The online and print newsletters publish sex advice aimed at the baby boomer generation. While such efforts deserve praise, they do not get to the heart of the problem: failure to defend the right to intimacy from older peoples perspective. The prevailing youth-centric definition of sexuality, emphasizing intercourse and strong desire for it, portrays sexuality in old age as abnormal. It rejects the need to be desired and loved on grounds of age.
Reproduced from [10]

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On the contrary, sexuality is not just about having sex, and health means more than being free of disease and infection. Condemning older peoples sex implies that their need for physical and emotional intimacy is not valid. These basic human needs do not have age limits. A recent Fulbright scholar, Andy Chen, raised these issues in his scholarship project. Entitled Imaging Intimacy, it is a work of graphic design and ethnography developed from extensive interviews with a small but diverse set of adults ages 51 to 75, gay and straight, transgender, male and female, committed and single. In the written portion, he explained how he used these interviews to develop images that explore questions such as, what does sex mean for older people? How do older people view themselves? What are their social networks, what sources do they trust, and with whom do they communicate to get information? The design process detailed in this book offers an inclusive approach: by advancing the argument that all people need intimacy and interaction, we hope to address implicitly the broader concerns surrounding loneliness and isolation in later life. Our ultimate goal is to promote older peoples ability to make informed decisions about their sex lives - free of shame, fear, violence, disease, and misinformation, he wrote [7]. There are many approaches that can be taken to help older adults take control of their sexual health. Researchers from the University of Chicago have created the National Social Life, Health, and Aging Project (NSHAP), a study on the role that social relations play in health as people age. Its end goal is to improve quality of life during aging. Unlike many previous studies, it surveyed a nationwide, nationally representative set of people, and its data will be made publicly available for research. It is population-based: it puts individual patient care in the context of groups of people with similar
References
1. Lindau ST, Gavrilova N. Sex, health, and years of sexually active life gained due to good health: evidence from two US population based cross sectional surveys of aging. BMJ. 2010; 340:c810. 2. Lindau ST, Leitsch SA, Lundberg KL, Jerome J. Older womens attitueds, behavior, and communication about sex and HIV: a community-based study. J Womens Health (Larchmt) 2006; 15:747-53. 3. Lindau T, Schumm P, Laumann EO, Levinson W, OMuircheartaigh C, Waite L. A national study of sexuality and health among older adults in the US. N Engl J Med. 2007; 357:22-34. 4. Friedman AL, Shepheard H. Exploring the knowledge, attitudes, beliefs, and communication preferences of the general public regarding HPV: findings from CC focus group research and implications for practice. Health Educ Behav. 2007; 34:471-485. 5. Lindau ST, Schumm LP, Laumann EO, Levinson W, OMuircheartaigh CA, Waite

needs, with the aim of improving a groups health without sacrificing the quality of individual care. They interviewed and collected measurements from 3,000 older adults in 2005 and 2006, and will interview them again in 2010 and 2011 [9]. The unprecedented scope of the NSHAP is also significant. According to U. S. Census projections, people age 65 and older will constitute 19.6% of the national population by 2030 [6]. While countries have historically reached developed status before aging, the birth rates in developing countries such as China and India are also dropping so quickly that their populations will age before their economies are considered developed. Issues concerning older adults will be magnified worldwide during the coming decades. Such studies will be valuable data collection models and sources of information for researchers all over the world. Social stigma against older adults sexuality has a significant impact on health. But the health care problems it creates also call for a concerted effort to change perceptions. The goal should be to educate the general public, not just older adults or teenagers, about how sexuality changes through a lifetime. Arguing that older people should Reproduced from [10] not need or want sexual intimacy is dehumanizing, and old age is a demographic category that most people will eventually join. It would be a shame for young people to wait until old age to attempt to correct this social stigma upon discovering that they are very much the same people inside as when they were young. Jennifer Sung is a rising third year at the University of Chicago majoring in biological sciences. This article was originally published in The Triple Helix Online at http://triplehelixblog.com/?p=2475

LJ. A study of sexuality among older adults in the United States. N Engl J Med. 2007; 357(8):762-774. 6. U. S. Census Bureau. U. S. Interim Projections by Age, Sex, Race, and Hispanic Origin, Table 2a. 2004 [cited 2011 May 14]. Available from: http://www.census.gov/ ipc/www/usinterimproj/. 7. Chen A. Imaging Intimacy. London: Helen Hamlyn Centre, Royal College of Art; 2010. 8. American Association of Retired Persons. AARP History [homepage on the Internet]. Washington: AARP; [cited 2011 Aug 9]. Available from: http://www.aarp. org/about-aarp/info-2009/History.html. 9. National Opinion Research Center [homepage on the Internet]. National Social Life, Health, and Aging Project [cited 2011 Aug 9]. Available from: http://www.norc. org/nshap. 10. Chen A. Imaging Intimacy. London: Helen Hamlyn Centre, Royal College of Art; 2010. Available from: http://www.hhc.rca.ac.uk/462/all/1/publications.aspx

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Big Change in Small Places: Development, Traditional Knowledge, and Womens Lives in the Peruvian Amazon
Margo Elizabeth Johnson

n a hill in Chazuta, a tiny indigenous village in the mitigate such unintended consequences. The first step of North-eastern Peruvian Amazon, six women sit working this process begins through discussion and solidarity with together in a circle. The steamy afternoon breeze is affected community members. punctuated by the muffled slaps and splashes of their practiced In 2010, I traveled to Peru to seek out such local perspechands wetting and shaping clay and the rhythmic scraping tives while considering the development impacts upon Chazuta of pebbles pulled across dried surfaces. Each woman is bent and its surrounding communities. I conducted exploratory over her task, carefully coaxing interviews and surveys with loher pieces through the necessary cal women and organizations to steps, starting with raw mud, better understand their thoughts Examples of some of the building into hollow vessels, and concerns about their own deissues experienced by women painting, shining and firing. velopment. This inductive, ethAs the hours pass, small connographic approach led to a long in Chazuta include machismo, versations rise and fall, strings of summer of evolving ideas and domestic violence, lack of Quechua and low laughter comcomplexities, ultimately weaving bined with Spanish. The piles of themselves into a triad of issues. control over life decisions and red, white, and black ceramics Over the course of thirty semiresources, limited rights to grow as the sun turns towards structured interviews with local the deep green hills. Little girls, women, twenty-seven surveys, own property and participate their black hair in loose pigtails and eighteen interviews with politically, a lack of access to and school uniforms wrinkled, governmental agencies, cooperarun in to sit with their grandtives, and non-profits, my focus health or education resources, mothers and play with scraps was directed towards the relaand restricted access to microof clay. The women soon shoo tionships between development them away and they dash down projects, traditional knowledge, credit the hill into the dusty central and womens roles and empowerroad, avoiding muddy divots and ment. These three themes were boney sleeping dogs. They run by women grilling chicken discussed repeatedly by the community members I spoke with and plantains outside of their front doors, mixing the scent of and are also key areas of debate in research today, though spices and hot oil with the pungent fermenting odor of cacao their interrelatedness has not been extensively explored. beans drying in the sun. This is a typical day in the jungle, appearing similar at the surface level to the daily rhythm of the last hundred years. However, livelihoods are shifting quickly in the area, and peoples routines are affected by the economic, infrastructural, and social changes brought by development and globalization. While many in these impoverished rural communities are excited about the arrival of electricity, running water, cell phones, television, and the possibility of more jobs and market access, others express concern about the ways in which these changes are affecting and alienating their ancestral way of life. Development initiatives have had diverse effects upon the communities, not all of which have been positive. For example, the continuation of traditional knowledge as well as the lives corresponding empowerment of women have seen mixed results. Thus, it is critical to identify the comprehensive Margo Johnson impacts of development projects at a local level in order to

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Development is a complex topic that is surrounded by velopment, seeking a more inclusive approach with greater extensive debate and competing worldviews. The majority of emphasis on local social development needs and human rights. mainstream development projects, such as those of Western A number of alternative development proponents emphasize governments as well as international agencies like the World Bank the critical inclusion of localized voices and values in the development process, bringing and International Monetary bottom-up approach to the Fund, typically espouse neoforefront of policy discussion liberal economic thought, em[7]. Research suggests that phasizing free market reforms, creating a means for more efcompetition, and deregulation fective social participation and as methods to reduce poverty development in communities and strengthen economies. involves the evaluation of the However, a vocal opposition voices and contributions of comto this style of development has munity members [8]. In Chazuta formed with groups of activists, and surrounding communities, some researchers, and comdevelopment initiatives, such as munity members protesting alternative income programs, emergent issues of social and health and education reform, environmental justice. Some and creation of infrastructure, large-scale economic develophave been largely top-down ment research found that the affairs with little to no local application of principles of eco Margo Johnson inclusion or understanding. nomic liberalization, including the Washington Consensus and Structural Adjustment Policies Many of the women I spoke with appreciated some of the , actually increased income polarization in two-thirds of the development improvements, but expressed their dissatisfacseventy-three countries that were examined [1]. Case studies tion with programs that were insensitive to local needs. For of specific countries and communities have offered support example, an alternative income program, sponsored primarily of these findings. In Nicaragua, Structural Adjustment Poli- by the Peruvian Government and USAID, introduced cacao cies led to a drop in earnings in both the informal and formal (the plant that yields chocolate) for export to replace coca work sectors, especially for women and informal workers [2]. (the plant that yields cocaine) growth in the region roughly ten years ago, providing locals Some research has found that these with seeds and training to cultiparticular types of market reforms vate the replacement crop. While have led to political instability, even After witnessing and cacao grows well in the region, it contributing to civil war, thus negataking part in the life is not traditionally grown and, in tively impacting public health and a short period of time, has drastieducation [3]. Many reforms are of the Chazuta region, cally changed the ways in which implemented due to a lack of underit became clear that people subsist. Most families sell standing and consideration of social their raw cacao to cooperatives for structures and power relations at a development projects, a prescribed bulk cost, providing micro-level. Other research suggests traditional knowledge, them with a small amount of cash that the majority of the mainstream income. With these new initiatives, development programs, especially and womens lives are all most inhabitants no longer grow in Latin America and the Caribbean, closely interconnected and the diversity or quantity of food have been formulated from the ideoitems they used to. As such, villaglogical and economic perspectives can impact one another in ers have had to find new sources of and interests of the industrialized both positive and negative income in order to buy imported western nations, as opposed to those and comparatively unhealthy food of the nations themselves [4]. This ways alternatives thus alienating local can have detrimental results, includculinary traditions. Moreover, the ing de-valuation of local culture and increased homogeneity [5]. A central issue is that development community does not have the amenities to process the cacao, practitioners often view the communities they are working so the chocolate cannot be consumed by most growers. The with as helpless and disadvantaged [6]. Hence, they do not situation is further complicated since men are overwhelmingly take into account the diverse skills and knowledge of the the only members of the cacao cooperatives, meaning that people in places where they are working applying, instead, they control the majority of the familys income. This trend places many women in a financially dependent situation that a one-size-fits-all approach to economic growth. Alternative approaches tend to focus on avoiding the can lead to abuse and disempowerment. Traditional knowledge, such as speaking native languages, widespread disparities and inequities of capitalist-driven de-

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Margo Johnson

production of artisan goods, music, and medicinal plant use, is a fundamental component of community identity and pride. Such knowledge is a topic of growing interest to international parties, including non-profit and governmental groups, corporations, and researchers, and is receiving more attention on the international agenda due to struggles with property rights, commercialization, and rapid loss of knowledge. There is a strong following for the idea that indigenous knowledge and relations with the natural world can teach developed nations to better manage their resources and to protect the planet [9]. However, these practices are declining rapidly, in part because some development projects contribute to changes in the traditional way of life. According to many institutions and researchers, loss of traditional knowledge should be prevented via economic means such as alternative income programs, some of which enable indigenous women to sell their textiles to tourists [10]. Yet, the women I spoke with suggest that such commoditization of traditional knowledge can in fact be detrimental and may change local values and access to these traditions. For example, women may be able to sell a limited amount of pottery or other artisan goods to niche markets of international buyers. However, this shift towards exchange value alters local accessibility, and the intrinsic and social value of the produced goods. Moreover, the price of the goods is subject to market whims, meaning that revenue generation is not stable. As one woman ceramicist stated, It is important that we focus on our culture as we develop and not just earning money. If we do not do this our roots will be lost. Womens roles are also changing in the communities, though gender inequities and violations of womens rights continue. This injustice can be exacerbated when social and cultural development needs, such as education and resources for women, are not met. According to the United Nations Gender Inequality Index, countries with uneven distribution of human development also experience high inequality between men and women, and countries with high gender inequality also experience unequal distribution of human development [11]. Examples of some of the issues experienced by women in Chazuta include machismo, domestic violence, lack of control over life decisions and resources, limited rights to own

property and participate politically, a lack of access to health or education resources, and restricted access to micro-credit. Many of the women I spoke with had been victims of domestic violence, and all of the interviewees were aware of violence ongoing in the community. Most also noted that they did not report the violence due to a lack of resources in the community and a fear of going to the male community chiefs and police officers. The violence stems in part from womens history of subordination by those who control resources and means of production- mainly men [4]. One Chazutan woman said that she stays with her husband, despite the fact that he beats her, so that her children can have a father to support them. Another woman stated, Women need to be trained to report domestic violence and to not be afraid. This is a function of social development. Prudent international cooperation and public policies can play a key role in promoting womens rights, empowerment, and greater participation and ownership of

Margo Johnson

projects by women so that true growth and justice can ensue. Such policies require an understanding of what empowerment means to the indigenous women inhabitants, rather than solely the development practitioners. Until policymakers begin to understand the context of the challenge, women, and society

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at large, will not attain the resources that are needed most to achieve comprehensive development [12]. After witnessing and taking part in the life of the Chazuta region, it became clear that development projects, traditional knowledge, and womens lives are all closely interconnected and can impact one another in both positive and negative ways. For example, development projects have the potential to help women by providing them with more job opportunities and resources, such as social support and prevention against domestic violence. However, when these projects work through male heads of home, as they often do, they can reinforce the system of patriarchy and machismo, disempowering women. Indeed, this is a perfect example of a policy that fails to target a root cause of injustice the predominant mindset of machismo. Likewise, development projects that emphasize economic progress over social programs run the risk of devaluing traditional knowledge and, progressively, the traditional skills of indigenous women. At the root of this issue is a lack of local participation and female input into decision-making. Development projects are largely still designed and executed by external parties that have their own agendas and ideas about what is needed. For example, in one of my interviews, a woman stated, Our development is like the legend of the monkey and the fish. The monkey sees the fish in the water and reaches in to pull it out before it drowns. The monkey just wants to help the fish but the fish dies. What unintended consequences might these developmental changes (the monkey) have on traditional knowledge and the lives of women (the fish) in these communities now and in the future? Over the course of my time in Chazuta and the surrounding communities, I became intimately aware of the subtleties of individual lives and of the incredibly complex factors weighing into the realities of development in the region. The daily rhythm of existence trying to provide for the most basic needs of a family as the ancestors did for generations before them while at the same time holding onto dreams of something better for ones children, are off-set by the changes that are reshaping life in the area. In the next year, many will have electricity, running water, and access to the outside world as they never have before. This will be a dream come true for most community members and will pave the way for more changes to come. Yet, resulting impacts will likely be mixed, with greater cash flow and market access altering cultural norms, the practice and transmission of traditional knowledge, and the lives of women. Should existing trends continue without intervention, economic and infrastructural
References 1. Cornia GA. The impact of liberalization and globalization on within-country income inequality. CESifo Economic Studies. 2003; 49: 581-616. 2. isani M.J. The negative impact of structural adjustment on sectoral earnings in Nicaragua. Review of Radical Political Economics. 2002; 35 (2): 107-125. 3. Tirman J. The Washington Consensus and armed conict: impacts on health care and education. Development. 2005; 48 (3): 35-40. 4. Bose CE, Acosta-Beln E, editors. Women in the Latin American development process. Philadelphia: Temple University Press; 1995. 5. Fischer TC. Whats wrong with globalization?. North Carolina, USA: CarolinaAcademic Press; 2009. 6. Mathie A, Cunningham G. From clients to citizens: communities changing the course of their own development. United Kingdom: Practical Action Publishing; 2008. 7. Gabriel T. The human factor in rural development. London: Belhaven Press; 1991. 8. Behera MC. Globalizing rural development: competing paradigms and emerging realities. London: Sage Publications; 2006.

development will likely carve out new lifestyles as most traditional knowledge fades into a novelty. With current projects, women may continue to enter the workforce and to have access to more resources for the betterment of their lives and those of their children. However, the underlying cultural framework of machismo, violence, and male domination may perpetuate, keeping women in inferior roles as they work harder and lose their traditional cultural identity. While these predictions may seem pessimistic and untenable, the changes that have already occurred in the region, along with many other regions and communities worldwide, show that such results are common. The next decade will be a time of great redesign and introspection for these communities and, should the local people not want to end up in such a scenario, true grassroots changes and ownership of projects must begin. This discussion is especially important given the timesensitive nature of these developmental issues. The communities are now in a critical stage where action in different directions may mean drastic changes in local values, traditional knowledge, and the roles and empowerment of women. Crucial questions emerge that urgently need to be considered. How is it possible to avoid loss of traditional knowledge and cultural identity while still enjoying the benefits and opportunities of development? How might communities promote womens rights and empowerment while maintaining traditional knowledge, which has in part been continued as a result of female subordination? What is the acceptable middle ground between respecting indigenous cultural norms and autonomy and promoting gender equity? These are all extremely sensitive and difficult questions. Many want to believe that successful development is possible in this and other regions worldwide through current programs that aim to reduce poverty and increase opportunities, while promoting traditional knowledge and womens rights and empowerment. However, this study suggests that a more nuanced approach is needed to address the complex interrelations between the three areas for mutual advancement. Positive change can begin with a stronger focus on local participation and ownership of projects, a comprehensive approach to economic development, and more extensive third-party research to evaluate developmental effects. Margo Johnson graduated in 2011 from Barrett the Honors College at Arizona State University with a degree in Psychology.

9. Berkes F, Colding J, Folke C. Rediscovery of traditional ecological knowledge as adaptive management. Ecological Applications, 2000; 10: 1251-1262. 10. Twarog S. Preserving, protecting and promoting traditional knowledge: national actions and international dimensions. p. 61. From: Twarog S, Kapoor P. editors. Protecting and Promoting Traditional Knowledge: Systems, National Experiences and International Dimensions. United Nations Conference on Trade and Development. New York; 2004. 11. United Nations Human Development Report 2010, Gender Inequality Index (Online). Available from: http://hdr.undp.org/en/mediacentre/summary/gender 12. Lennie J. Critically evaluating rural womens participation and empowerment: an interdisciplinary feminist framework for research and analysis. In: Behera MC. Globalizing Rural Development: Competing Paradigms and Emerging Realities. London: Sage Publications; 2006. All quotes translated from Spanish by the author. Participant names were omitted to guarantee anonymity.

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ACKNOWLEDGMENTS

The Triple Helix at the Brown University would sincerely like to thank the following groups and individuals for their generous and continued support: Brown University Undergraduate Council of Students The Undergraduate Finance Board at Brown University Katherine Bergeron, Dean of the College Professor Anne Fausto-Sterling Department of Science and Technology Studies Participating Members of the Faculty Review Board: Andrea Megela Simmons Daniel Weinreich Gary Wessel

2011 The Triple Helix, Inc. All rights reserved. The Triple Helix at Brown University is an independent chapter of The Triple Helix, Inc., an educational 501(c)3 non-prot corporation. The Triple Helix at Brown University is published once per semester and is available free of charge. Its sponsors, advisors, and Brown University are not responsible for its contents. The views expressed in this journal are solely those of the respective authors.

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