Science in Society Review - Spring 2009 by The Triple Helix at UChicago

Vol 4 Spring 2009 | National University of Singapore

A Production of The Triple Helix

THE SCIENCE IN SOCIETY REVIEW The International Journal of Science, Society and Law

Prions: From Dogma, to Mystery, to Benefit?

Yoga: A Potential Cure for Cancer

Legislating Value Should Opportunities and Pitfalls in the Bid for a Sustainable Future ASU • Berkeley • Brown • Cambridge • CMU • Cornell • Dartmouth • Georgetown • Harvard • JHU • LSE • Northwestern • NUS • Oxford • Penn • UChicago • UCL • UNC Chapel Hill • University of Melbourne • UCSD • Yale

EXECUTIVE MANAGEMENT TEAM Chief Executive Officer Julia Piper Executive Editor-in-Chief Bharat Kilaru Executive Editor-in-Chief, E-Publishing Bharat Kilaru Executive Production Editors Bradley French Kim-Yen Nguyen Chief Operating Officer, North America Daniel Choi Chief Operating Officer, Europe Hannah Price Chief Operating Officer, Asia Kevin Pye Phyo Nay Yaung Chief Operating Officer, Australia Elizabeth Zuccala

Managing Production Editors Vivian Cheng Chu Hsiao Senior Production Editors Luna Chen Jessica Lee Production Editors Raca Banerjee Darwin Chan Christina Choi Jasmine Chuang Yiyi Chu Eno-obong Ifeanyi Essien Rinki Goswami Younshin Jung Yi Li Becca Liu Pavitra Muralidhar So Hae Park Reshmitha Radhakrishnan Amanda Su Emily Throwe Allen Wang Dian Yang Jessica Ye BOARD OF DIRECTORS

Chief Technical Officer Nandita Seshadri

Chairman Kevin Hwang

Executive Director of Science Policy Karen Hong

Vice Chairman Erwin Wang

Executive Director of Business and Marketing Anshul Parulkar Executive Director of Internal Affairs Jennifer Yang

Secretary Melissa Matarese Alumni Chair Joel Gabre Finance Chair Kalil Abdullah

INTERNATIONAL DIRECTORS

TRIPLE HELIX CHAPTERS

Business and Marketing Division Alexander Han

North America Chapters Arizona State University Brown University Carnegie Mellon University Cornell University Georgetown University Harvard University Johns Hopkins University Northwestern University University of California, Berkeley University of California, San Diego University of Chicago University of North Carolina, Chapel Hill University of Pennsylvania Yale University

Member Resources Division Nikhita Parandekar Science Policy Division Paul Shiu Hann-Shuin Yew GLOBAL LITERARY & PRODUCTION Senior Literary Editors Dayan Li James Kennedy Jennifer Ong Mira Patel Jonathan Sung Nikhita Parandekar E-Publishing Editors Kevin Pye Phyo Nay Yaunge Matthew Howard Mira Patel Vice Executive Production Editors Chikaodili Okaneme Yang Zhang

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Europe Chapters Cambridge University London School of Economics Oxford University University College London

THE TRIPLE HELIX A global forum for science in society

The Triple Helix, Inc. is the world’s 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 tomorrow’s 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!

Asia Chapters National University of Singapore Australia Chapters University of Melbourne

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TABLE OF CONTENTS

The ramifications and significance of change

The Costs of a Mechnical Heart:

Do outcomes justify the burdens?

Cover Article 4

Legislating Value: Opportunities and Pitfalls in the Bid for a Sustainable Future

Why Do We Procrastinate? Examining the intentional delay of tasks

UCHICAGO UC CH C HI

Stem Cell Research Policy in the U.S.:

Dan Plechaty, UChicago

Local Articles 6

Could Not the Race of Men Be Improved?

Laurel Mylonas-Orwig

The Ramifications of Previous Stem Cell Research Policy in the U.S. and the Significance of Its Changes

Anomie: Post-Academic Science and the Ownership of Knowledge

Daniel M. Choi

The American University and Web 2.0: A New Paradigm?

Jonathan Dine

Science: Too Big to Fail?

Jonathan Hartley

Psychologists and Coercive Interrogation

Kara Christensen

Anna Zelivianskaia

International Features 22

The Cost of Treating Heart Failure Patients with Mechanical Circulatory Support: Do Outcomes Justify the Physical, Emotional and Financial Burden?

Eric M. Anderson, ASU

Overeager Genomics

Andrew Fister, Cornell

New Stimulus, Better Health Care?

Why Do We Procrastinate?

The Feminization of the HIV/AIDS Epidemic in Bangkok, Thailand: Examining the Breadth of Women’s Burden

Sarah Schoenbrun, Brown

The Media: Scientists Can’t Live With Them and They Can’t Live Without Them

Laura Corrigan, Cambridge

Prions: From Dogma, to Mystery, to Benefit?

Yoga: A Potential Cure for Cancer

Cover design courtesy of Eric Li, UChicago

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Jane Yang, Cornell

Rebecka Skarstam, Cambridge

David Koren, Brown

Akanksha V. Vaidya, CMU

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INSIDE TTH

Message from the Chapter President Dear Readers, In the last year, TTH at UChicago has witnessed a burst of interest not only in the literary scene, but also in science policy and international involvement. After winning awards for the 2006-2007 “Best New RSO” and the 2007-2008 “Best Publication on Campus,” we realized something. We had come a long way. At that moment, we realized we needed take our momentum to push forward as an undergraduate organization at the forefront of science policy discussion. Each UChicago article in the following pages is derived from an outstanding level of editorial and literary commitment. Each piece represents not only the work of the writer, but also the work of one-onone associate editors, a highly effective editorial board, imaginative international senior literary editors, and a faculty review board that provides professional expertise on every topic. As you read the following pieces, we hope you will come to appreciate the truly professional level of work that goes into each. STAFF AT UCHICAGO President Sean Mirski Editor-in-Chief Bharat Kilaru

With the newfound pace that will now define the international scene, the University of Chicago will strive to lead the new wave of global connectedness and communication through example. As you read through our journal, we hope you will look to the Triple Helix at the University of Chicago as the focal point for undergraduate work exploring the hidden secrets of “science in society.”

Managing Editors Dan Plechaty Rohan Thadani

Thank you,

Directors of Science Policy Jim Snyder Michelle Schmitz Daniel Choi

Bharat Kilaru Editor-in-Chief

Director of Marketing Lauren Blake

Sean Mirski President

Faculty Review Board Pamela Martin Robert Richards John Boyer Robert Rosner Rick Shweder Rick Kittles Associate Editors Joe Wang M. Moore Lakshmi Sundaresan Chris Milroy Matt Doiron Anna Zelivianskaia Kara Christensen Writers Anna Zelivianskaia Dan Plechaty Daniel Choi Jonathan Dine Jonathan Hartley Kara Christensen Laurel Mylonas-Orwig

Dear Reader, Every volume of The Science in Society Review offers up something new and different. This being our first literary cycle as Managing Editors, we were excited to see where our writers would choose to take us. Over the course of several months, what emerged was a story that is perhaps more important than the sum of the individual article topics. Through a combination of science, economics, history, and law, our writers have explored the proper role of science in society in its many iterations. Whether it be federal guidelines on scientific research, the ethics of applying scientific knowledge, or how science should inform public policy, all of the articles embody the interdisciplinary nature, practical focus, and careful analysis that The Triple Helix strives for. Our own articles are complemented by a selection of international features that our editorial board found to be particularly illuminating and insightful. We are very proud to present to you this end result, and we look forward to continuing the discussion through our upcoming events and subsequent journal publications. Dan Plechaty and Rohan Thadani Managing Editors The University of Chicago Triple Helix

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INSIDE TTH

Message from the CEO Dear Reader, In 1972, two young scientists turned their backs on university textbooks and inverted the world of evolutionary biology by brazenly focusing on patterns of punctuated equilibrium in the fossil record that others had overlooked. Niles Eldrege and Stephen Jay Gould did so by departing from a preconceived model of how evolution should work, instead developing a model to fit the existing data, the scientific equivalent of having an “open mind.” In doing so, they redefined the way we understand life on earth. Theoretically, we all strive to have open minds. However, conclusions drawn from experience, education, and institutional belief systems tend to cloud this intention. A novelty of the Science In Society Review is its student-composed articles. This inexperience, far from being limiting, allows for a lucid, fresh exploration. It offers a chance to grow an open mind. It offers a chance to develop new interpretations by redefining the question. It offers a chance for those who will be dealing with the crisis situations of tomorrow, to ponder their beginnings today. This is the power of a forum, and, the more we engage, the more we all will succeed. TTH’s new divisions and chapters are an embodiment of this philosophy. In this time of global crisis there is a desperate need for open minds because, clearly, something in our prior thinking is not working. For many students, this journal is an opportunity to reengineer the way we approach problems, and we hope that, as readers, you revel in the challenge. Sincerely, Julia Piper Chief Executive Officer The Triple Helix, Inc.

TTH Launches Electronic Publishing As reflected upon above, we are all, even experienced scientists, tempted to employ comfortable modes of analysis, to instinctually gravitate towards what is professionally accepted, what is the status quo. Through rigorous undergraduate journalism, members of TTH have created an organization that looks to reason on a more than instinctual level. TTH’s most recent exciting venture is into the fast-paced, broadly-accessible, on-line world of Electronic Publishing. We have coupled this dynamic new medium with Georgetown University’s GlobalSolver, a program that brings in experts from industry, government, and academia to offer advice on often highly technical topics to writers around the world. As we move forward with this initiative, we hope you join us in our efforts to not only break past the status quo, but to redefine it. Help us reengineer the way we think at thetriplehelix.org.

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UCHICAGO

Legislating Value: Opportunities and Pitfalls in the Bid for a Sustainable Future Dan Plechaty

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is that nature has an economic use, “entailing privileges but not obligations” [1]. By designating nature as something that has intrinsic value, they are rendering it morally equivalent to other entities that cultures generally give intrinsic value to, such as humans. If we had the same moral respect for nature as we did for other human beings, so the argument goes, then we would conserve more and pollute less. This method relies on the spread of an environmental ethic to be successful, and defines sustainability through popular consensus. It would seem as though the push for an environmental ethic is working. Exhortations to be “green” abound in advertisements and though popular culture, and there is a wide selection of products aimed at the environmentally conscious. All of this, however, has been ineffective at slowing down the growth of carbon dioxide emissions [2], forest clearings [3], and watershed depletion [4], to name but a few of the issues environmentalists are concerned with. What is it then that is going wrong? It could be that spreading an environmental ethic simply is not enough. Not everyone will be convinced, and sustainability requires large changes in economic activity very quickly. One problem is single-action bias. Psychologically, we are hardwired to be satisfied after taking a single action to combat even complex problems. This means that we might make one small change, such as using energy-efficient light bulbs, without comprehensively reevaluating how we interact with the environment. Using energy-efficient light bulbs is great, but how can we force large corporations to pollute less and conserve more? Public opinion is beneficial in giving businesses an incentive to at least try to appear ‘green’, but it may be even more useful in providing the political support for laws that regulate how businesses interact with the environment. Instead of through popular consensus, sustainability would be defined by laws. In the form of taxes, subsidies, cap-andtrade markets, or outright prohibitions, legal regulation has the advantage of being comprehensive in scope and immediate in effect. Anything less would not be sufficient for environmental problems that are structurally pervasive. There are, however, many difficulties in both writing and enacting the laws. As noted earlier, the authors of such laws must first decide what it is that we are to sustain, and then determine the exact level to tax, the number of permits to auction, or prohibitions to set. This relies on scientific knowledge that is still highly uncertain in both the particulars and general

(Clockwise from top-right) Reproduced from [6], [7], [8], [9].

espite the recent economic downturn, more goods and services were produced in 2008 than any other year in human history. Individuals in the developed world have access to a vast array of goods and services that in previous centuries only the wealthiest could have hoped to enjoy. Much of this economic activity affects not only the buyers and sellers, but also third parties, including other people and the environment. These externalities were for a long time ignored, as both the land and its ability to absorb human impacts seemed boundless. However, the growth of our technological prowess and material wealth has been accompanied by consistent increases in the human population. Due to the strain put on natural systems by human production, there has been a growing concern that our practices are not environmentally sustainable. How are we to live more sustainable lives, and what are some of the political difficulties we will encounter? The issue first demands a definition of ‘sustainability.’ It is simple to say that a practice is sustainable or unsustainable, but this obfuscates the moral framework on which this assertion is grounded. Instead, one should be asking, what are we sustaining, and who or what are we sustaining it for? To address these questions we rely on a judgment of what we believe to be intrinsically valuable. For example, if you believe that only humans have intrinsic worth, then your prescription for sustainable action will not involve the preservation of natural systems that do not directly benefit humans. There are always tradeoffs to be made, and different people would wish to make these in different ways. The first problem in becoming more sustainable, then, is finding agreement on what practices are and are not sustainable. The important corollary to this question asks how we are to transition away from being unsustainable. There are two distinct methods: through new ethical attitudes towards the environment, or by enforcing environmental values through economic legislation. Most environmentalists prefer the first option: the problem, they say,

UCHICAGO

References: [1] Leopold A. The Sand County Almanac. Oxford: Oxford University Press; 1949. p.203. [2] Energy Information Administration. Greenhouse Gases, Climate Change and Energy. Available from: http://www.eia.doe.gov/bookshelf/brochures/greenhouse/Chapter1.htm. [3] Food and Agriculture Organization of the United Nations. Deforestation continues at an alarming rate. Available from: http://www.fao.org/newsroom/en/news/2005/1000127/ index.html. [4] United States Geological Survey. High Plains Aquifer Water-Level Monitoring Study. Available from: http://ne.water.usgs.gov/ogw/hpwlms/tablewlpre.html. [5] Hardin G. The Tragedy of the Commons. Science. 1968;162:1243-1248. [6] http://www.nrel.gov/data/pix/Jpegs/05289.jpg

reached? The only way this could realistically happen is if a major economic power legislated new trade laws that mandated certain environmental standards to be met in the production of imports. Other countries would then have to change their environmental standards if they thought that the trade with the first country was too important to lose. Of course, this is a big gamble for the first country if other countries decide to sever trade ties. For this to work in practice, both the United States and the European Union would need to aggressively push through trade laws. Other countries may follow suit, at least for their exports, although this would not affect world trade between other countries. Even with this politically unlikely scenario, there are a lot of unsolved problems. Choosing what we want to sustain, mustering the political effort to pass laws, and enforcing these laws still pose significant problems. Ethical changes, legal regulation and technological improvements cannot by themselves change our economy into a more sustainable one without significant costs. Add to this the scientific uncertainty in even the best models, and it becomes even more difficult to determine the optimal amount of pollution reduction. I do not believe that our political and economic systems offer much hope for resolving the global issue that is climate change. The prospects for curtailing localized pollution are greater, as there are fewer affected parties and more immediate costs and benefits. This will likely exacerbate the problems of the developing world in the next century, while imposing significant costs on the developed world as well. Legislating value may be the only way to avoid these environmental costs, but passing comprehensive legislation may prove to be impossible in the global political environment.

(Clockwise from top-right) Reproduced from [10], [11], [12], [13]

outcomes. Then, a system of enforcement must be devised, which can be costly and potentially circumvented by the less scrupulous. This arrangement would promote a more efficient allocation of resources by inducing shifts away from ‘brown’ (high-emission) economic sectors, but this is not necessarily equitable. Some sort of compensatory mechanism would need to be enacted so that these laws are fair to those who lose their jobs and need to be retrained, and for the poor who are disproportionately affected by the resultant price increases in basic necessities such as food and energy. Beyond writing good laws, a significant challenge will likely be the political incentives that individual countries and politicians face. Pollution and climate change are problems of global significance, and in order to deal with them, large and expensive economic retoolings will need to be made by the global community. An individual country, however, could easily free ride on the rest of world if it chooses not to reduce emissions. It would then receive the benefits of reduced pollution and climate change, without having to pay the cost of reducing emissions. This is the classic “tragedy of the commons” scenario originally proposed by Garrett Hardin [5]. Similarly, “upstream” nations or communities will experience political pressure to continue practices that are economically advantageous for them, but which may cause adverse consequences for “downstream” nations. Possibly the biggest hurdle is that global warming and pollution will hurt developing countries more, as their economies are generally agriculturally-based and they do not possess the requisite technology or resources to mitigate the effects of climate change. Developing countries also have comparatively lower per capita emissions and are already in parts of the world with above-average temperatures. The developed nations have the ability to dampen the effects of pollution and climate change, coupled with weaker incentives to do so as their economies are not as reliant on favorable climate conditions. It is also incredibly difficult to believe that nations that are otherwise hostile towards each other will be able to agree to environmental standards. Without this happening, however, production of pollutionintensive goods will begin to relocate to countries with lax environmental standards, undermining the effectiveness of other environmental laws and boosting the economies of free rider countries. Is there any possibility of a global consensus on environmental standards being

Dan Plechaty is an undergraduate at the University of Chicago. [7] http://www.flickr.com/photos/74281168@N00/173937750/ [8] Library of Congress CALL NUMBER LC-USW36-376, reproduction number LC-DIGfsac-1a35072 [9] www.oceanservice.noaa.gov [10] http://en.wikipedia.org/wiki/File:Eolienne_et_centrale_thermique_Nuon_Sloterdijk. jpg [11] http://www.nsf.gov/news/mmg/media/images/nsb_energy2_h.jpg [12] http://www.atlantaga.gov/client_resources/media/city%20newsbytes/060606/panda_1. jpg [13] http://www.nsf.gov/news/mmg/media/images/nsb_energy1_h.jpg

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UCHICAGO

Could Not the Race of Men Be Improved? Laurel Mylonas-Orwig

nowledge of the human genetic code has expanded at they are implanted [7]. an unprecedented rate over the second half of the 20th There is no doubt that PGD, amniocentesis, and chorionic century. The five decades between the discovery of villus sampling are beneficial technologies. Since screening the double helix structure of DNA in 1953 and the culmina- programs for high-risk groups were set up in the 1970s, intion of the Human Genome Project in 2003 have yielded an stances of diseases such as Tay-Sachs and α-thalassemia have extraordinary amount of information about the fabric of the been reduced twenty-fold [8]. Prenatal screening is also inhuman race [2]. This knowledge has given us the ability to strumental in the diagnosis of non-lethal conditions such as manipulate our DNA, selecting for certain traits and against phenylketonuria and hypothyroidism, which are manageable others. At the same time, new discoveries about the genetic if treated early. In addition, PGD allows couples that cannot basis of health problems like obesity and attention-deficit dis- risk a natural pregnancy, due to the risk of genetic disease, order (ADD) are being trumpeted in newspapers and scientific to become parents of healthy children [9]. journals alike [3, 4, 5]. If we use genetic selection methods Yet as valuable as PGD is, it brings us into uncertain ethito eliminate these “problem” genes from a child’s genomic cal territory. At present, there is no codified agreement about structure, we seem to stand at the precipice of taking charge when PGD is appropriate [10]. The common accord among of our own evolution [1]. medical professionals and ethicists is that it should be used to Before we rush forward, we must consider carefully the avoid known risks for single-gene disorders or chromosomal consequences of our actions. Geabnormalities; to provide aneunetic selection techniques raise a ploidy (multiple chromosome) host of ethical, moral and legal screening for older women, who questions. Consider the example are more prone to it; and to select If we use genetic selection of preimplantation genetic diagsex when X-linked disease is a methods to eliminate these nosis (PGD). The latest in a line possibility [10]. However, it is of genetic selection techniques, now quite common for PGD to ‘problem’ genes from a child’s PGD is a huge step forward in our be used for non-medical sexgenomic structure, we seem to quest to understand and eliminate selection, or “family balancing.” genetic disease. While many have Self-reported statistics from clinstand at the precipice of taking benefited from PGD, this invenics offering PGD indicate that 42% charge of our own evolution. tion also imparts the impression of those clinics have performed that people are no more than a non-medical sex-selection [10]. combination of genetic traits that It is reasonable to assume that can be “made to order”—a danas PGD becomes more popular, gerous oversimplification. Despite this problem, there has use of the technique for non-medical purposes will increase. yet to be a comprehensive discussion about the implications The question then becomes where to draw the line: in of PGD, both for patients and society. As PGD becomes a what cases is PGD not appropriate? It seems clear, for exwidespread technique, it is crucial that as we make ourselves ample, that selecting against the gene for a terminal disease aware of its possibilities, we also acknowledge its limitations. such as Tay-Sachs is appropriate. But is selecting against the Only through an informed discussion can we define the ac- so-called “obesity gene” appropriate? Evidence demonstrates ceptable applications of genetic technology. that obesity is influenced by environment and lifestyle, as well Preimplantation genetic diagnosis follows in the foot- as genetics [4]. Wanting to save a child from the health and steps of two other genetic selection techniques: amniocentesis cosmetic problems associated with obesity might be noble, but and chorionic villus sampling. These procedures fall under eliminating the “obesity gene” may not do that. Nonetheless, the category of prenatal genetic screening, and are especially “gene-for” language—gene for obesity, gene for ADD, gene important for those people predisposed to genetic diseases or for social behavior—easily leads to the misconception that defects like Hemophilia-A, Duchenne muscular dystrophy, genetics is the “magic bullet” of biomedical science that will Tay-Sachs disease, sickle-cell anemia, and α-thalassemia [6]. solve many of our social problems [11, 12]. In reality, there is However, amniocentesis and chorionic villus sampling can no guarantee that PGD or any other technology can “solve” only be performed after pregnancy is established, meaning the problem of genetic disease. What DNA-based diagnostics that genetic diseases and defects can be diagnosed, but not can do is benefit health care in the short term by reducing the avoided. PGD works as a “bridge technology,” uniting ad- incidence of severe or presently untreatable diseases [8]. A vances in genetic understanding with in vitro fertilization long-term solution—complete removal of the traits—is much methods to allow for prenatal screening of embryos before more difficult, especially given that a cause of genetic disease

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UCHICAGO is genetic mutation, which could not be detected in genotypic closely matching Molly’s marrow type. The procedure was a carriers unless every child born had undergone PGD. success; shortly after baby Adam was born, blood stem cells While a future directed by PGD may appeal to some, we from his umbilical cord were transplanted into Molly, saving cannot pursue short-term goals while disregarding the long-term. her life. We have not yet been able to gather comprehensive data about The reactions to the Nash case were vicious, with critics possible side effects, as the oldest living PGD baby is only 19 condemning them for “ordering a child.” The case also highyears old [8]. Nor do we understand the full complexity of the lighted the ethical issue of therapy versus enhancement [17]. human genome, meaning that as we tinker with a fetal gene, When it comes to the acceptability of PGD, this distinction is an we do so largely blind to the effects this may have on other important one because of an oft-repeated normative framework: genes [13]. Still, we are venturing closer to human genetic PGD for therapeutic reasons is morally acceptable, PGD for nonengineering [12, 14, therapeutic reasons 15]. Some talk of a is not [7]. But using future with ‘designer this strict dichotomy offspring,’ worrying creates other probthat this will create a lems. A 2005 article “genobility” that only for the Harvard Law those rich enough to Review argued that afford PGD and IVF drawing a line becan enter into—a tween therapeutic premise exploited and non-therapeutic by the 1997 scienceimplementations of fiction film “Gattaca” PGD leads to the [16]. “pathologization The reality, problem,” which however, is that PGD arises from the labelis not genetic engiing of some traits as neering. Genetic “normal” or “desirengineering involves able” while branding the alteration of the others as “abnormal” genetic makeup of or “undesirable” [7]. the embryo, while In cases of degeneraReproduced from [19] tive or fatal disease, the embryos used in PGD are comprised of unaltered parental DNA [7]. But PGD this division is uncontroversial. For other characteristics, does approximate genetic engineering more closely than other however, this framework is problematic. An apt example techniques by allowing for the active screening of embryos is deafness. While congenital deafness is overwhelmingly before they are implanted. In 2000 a Denver couple named regarded as a handicap in America, there is a substantial Lisa and Jack Nash showed the world the potential of PGD. deaf community that views deafness as a culture difference The Nashes’ six-year-old daughakin to race or ethnicity [7]. A ter Molly suffered from Fanconi deaf lesbian couple in Maryland anemia, a deadly genetic disease. even went so far as to request a She desperately needed a bone congenitally deaf sperm donor Nonetheless, ‘gene-for’ marrow transplant, but neither for IVF in order to maximize language—gene for obesity, parent was a match. With the their chances of having a deaf survival rate for a non-family baby. Had the couple requested gene for ADD, gene for social donation hovering at a dismal PGD to ensure success, like the behavior—easily leads to the 18%, the Nashes’ best hope was Nashes, one can only imagine to have another child [17]. Bethe firestorm that would have misconception that genetics is cause both parents were carriers resulted: using PGD to screen the ‘magic bullet’ of biomedical of the recessive trait, their chance in deafness would never be conof having an afflicted child was sidered therapeutic in the court science that will solve many of relatively high at 25%, while the of public opinion [7]. our social problems. probability of having a healthy When it comes to PGD, pubdonor match was extremely low lic opinion must be taken into [17]. Thus, the Nashes sought to account because genetic selection ensure a favorable outcome: doctors created several embryos technologies will eventually impact society at large. But the using IVF, then screened each for the Fanconi anemia gene. public is unpredictable. A March of Dimes survey found Those without it were screened further to find the one most that 11% of parents would abort a fetus whose genome was

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UCHICAGO predisposed to obesity, 80% would abort if a fetus would grow gies will have a significant impact on the way we view and up with a disability and 43% would enhance a child’s appear- interact with our genetic code in the future. Nearly 150 years ance via genetic engineering, given the choice [14]. However, ago, Francis Galton, the founder of the Eugenics Movement, another poll found that 60% of respondents disapproved of saw genetics as the salvation of the human race. “Could not non-medical sex selection, while a surprisingly high 32% also the race of men be improved?” Galton wondered, “Could not disapproved of PGD to avoid fatal disease [10]. Only one the undesirables be got rid of and the desirables multiplied?” matter seems certain: an overwhelming 88% of respondents [1]. Today, genetic technologies like PGD have brought us felt that limits should be set for acceptable and unacceptable closer than ever before to making Galton’s musings a reality. uses of reproductive genetic testing [10]. Yet we must be aware of the problems linked to PGD: insufAlthough society desires ficient data on long-term results, legal regulation for PGD, Dr. the “gene-for” language of genetic William Schoolcraft, the Nashes’ determinism, and the pathologiUltimately, it is imperative fertility specialist, argues that the zation problem. We must also ask that we create a codified choice of when PGD is appropriwhat consequences our genetic ate is a purely social one. “As tampering will have. framework governing the long as the community is still These issues are not only acceptability of genetic responsible enough to use [gefor medical ethicists to debate. netic testing], a superbaby won’t The speculations of several gentechnology, so that as we seek happen,” he says [17]. Indeed, the erations are now faced with emto improve the human race, creation of a “superbaby” may pirical realities; we will be best not even be possible. Thus far, served by promoting an underwe can do so in a socially, PGD has targeted only singlestanding of these realities and ethically, and morally gene traits. Because characteristics engaging the public at large in like intelligence and athleticism an informed, open, and critical responsible manner. are controlled by complex and evaluation of these technologies variable genetic interactions, we [13]. Although such a debate will are not yet able to select for them. never lead to a consensus, it will But Dr. Jeff Steinberg of the Los Angeles Fertility Institute provide the opportunity to educate the public about current believes we are moving in the direction of “designer babies.” issues, as well as to assess opinions about the direction these Dr. Steinberg claims that by 2010 he will be able to help parents technologies should move in. This discussion can also inform select hair and eye color for their offspring [18]. He notes, lawmakers as greater regulation emerges. Ultimately, it is however, that there are no guarantees, since the genes gov- imperative that we create a codified framework governing erning hair and eye color are not understood as well as the the acceptability of genetic technology, so that as we seek to single-gene genetic diseases PGD is currently used for [18]. improve the human race, we can do so in a socially, ethically, The extent to which PGD is capable of fulfilling the prom- and morally responsible manner. ises being made of it—or the fears linked to it—remains to be seen. But there is no question that PGD is moving us into Laurel Mylonas-Orwig is an undergraduate at the University of uncharted genetic territory. The effects of selection technolo- Chicago.

References: [1] Kevles D. In the Name of Eugenics: Genetics and the Uses of Human Heredity. New York: Harvard UP; 1998. [2] 2003: 50 Years of the Double Helix. Human Genome Project, Oak Ridge National Laboratory. <http://www.ornl.gov/sci/techresources/Human_Genome/project/50yr.shtml>. [3] McGough R. Attention-Deficit Gene is Located. Wall Street Journal. 2002 Oct 22. [4] Myriad Genetics Discovers Major Cause of Hereditary Obesity. Myriad Genetics, Laboratories and Pharmaceuticals. 2002 Oct 29. <http://www.myriad.com/news/ release/350345> [5] Lijam N, McDonald M, Crawley JN, Deng CX, Herrup K, Stevens KE, et al. Social Interaction and Sensorimotor Gating Abnormalities in Mice Lacking Dvl1. Cell. 1997; 90: 895-905. [6] Dungan JS, Elias S. Genetic Evaluation: Merck Professional Manual. Merck and Co. Inc. 2008 Dec. <http://www.merck.com/mmpe/sec18/ch257/ch257b. html#CACHAGCC>. [7] Regulating Preimplantation Genetic Diagnosis: The Pathologization Problem. Harvard Law Review. 2005; 118: 2770-791. <http://www.jstor.org/stable/4093434>. [8] Caskey CT. Presymptomatic Diagnosis: A First Step Toward Genetic Health Care. Science. 1993; 262: 48-49. <http://www.jstor.org/stable/2885665>. [9] Fackelmann KA. Test-Tube Diagnosis. Science News. 1994; 145: 286-87. <http://www.jstor.org/stable/3978507>.

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[10] Baruch S. PGD: Genetic Testing of Embryos in the United States. Genetics and Public Policy Center, Johns Hopkins University. 2009 Feb 15. [11] Parens E. Genetic Differences and Human Identities: On Why Talking about Behavioral Genetics is Important and Difficult. The Hastings Center Report. 2004; 34: S1-S36. <http://www.jstor.org/stable/3528254>. [12] Allen GE. Is a New Eugenics Afoot? Science. 2001; 294: 59-61. <http://www.jstor.org/stable/3084765>. [13] Bonnicksen A. Genetic Diagnosis of Human Embryos. The Hastings Center Report. 1993; 22: S5-S11. <http://www.jstor.org/stable/3563031>. [14] Mitchell CB. Hurtling Toward Eugenics...Again. The Center for Bioethics and Human Dignity. 2002 Mar 7. <http://www.cbhd.org/resources/genetics/ mitchell_2002-03 07.htm>. [15] Kristof ND. The New Eugenics. New York Times. 2003 July 4. <http://www.geneticsandsociety.org/article.php?id=150>. [16] Green RM. Building Baby From the Genes Up. Washington Post. 2008 Apr 13. <http://www.washingtonpost.com/wpdyn/content/article/2008/04/11/AR2008041103330.html>. [17] Faison AM. The Miracle of Molly. 5280 Magazine. 2005. <http://www.5280.com/issues/story_for_print.php?pageID=11>. [18] Kaufmann H. Are Designer Babies Ethical? The Early Show. CBS, New York, NY. 2009 Mar 3. [19] http://www.nlm.nih.gov/visibleproofs/media/detailed/iii_d_220.jpg

UCHICAGO

The Ramifications of Previous Stem Cell Research Policy in the U.S. and the Significance of Its Changes Anna Zelivianskaia

ichael J. Fox, a victim of Parkinson’s disease, once remarked on the best argument for continuing with stem cell research, “If something has that much promise, there's no good argument to walk away from it. We need to find a way to do the work.” [1] Parkinson’s disease, along with Alzheimer’s, spinal cord injury, and others, might one day be cured through the use of stem cells. Fox’s quote essentially summarizes the supporters of the stem cell debate—if we have the tools that could help cure debilitating diseases, how can we not use them? However, if you take away the claim that stem cell use is the only way to cure the diseases in question does the argument fall apart? This has been the essence of the argument against stem cell research, particularly since March 2009, when President Barack Obama repealed former President Bush’s ban on federal funding for stem cell lines created after August, 2001. Even though embryonic stem cells—the controversial type of stem cell—undoubtedly were important to science years ago, did Bush’s limitations really slow down America’s progress in the scientific community or did its scientists merely find new ways to approach the same research without employing embryonic stem cells? A natural extension of these questions is to ask whether Obama’s measure was genuinely necessary or purely symbolic, and what it actually means for the future of stem cell research and the war against incurable disease. The significance of stem cells to the advancement of scientific research is already well known, but the debate about embryonic stem cell use has continued through several administrations: those of presidents Clinton, Bush, and now, Obama. Stem cells are significant to science because they have the potential to differentiate into any type of cell, which leads scientists to hope that they can be used to cure chronic diseases. There are two types of stem cells that can be used—embryonic stem cells, which are easy to grow in lab conditions and can differentiate into any type of cell, and adult stem cells, which are taken from adult organs, are much harder to grow in lab conditions, and are considered less pluripotent. Even though embryonic stem cells are much more convenient to use and have greater potential, they are generally extracted from a lab-created embryo. Critics say that this process destroys human life because

it “kills” an already created ball of cells that can develop into a person [2]. Additionally, creating embryos for the gain of their stem cells blurs the lines between research processes and human cloning. Since cloning human embryos for the purpose of harvesting their stem cells is termed “therapeutic cloning,” federal funding has always been scarce in this field because of the frightening possibilities of what these cloning techniques could lead to [3]. When President Bush initially placed a ban on federal funding directed towards stem cell research on August 9, 2001, it excluded all stem cell lines not currently in existence from receiving government funding, which limited the public research conducted to just twenty-one embryonic stem cell lines. This limitation led many scientists to fear that it would place America at a disadvantage internationally, especially considering the fact that many countries had more liberal stem cell laws [3]. In 2003, the Houston Journal of International Law published an article by Denise Stevens in which he analyzed the U.S. stem cell policy, and after examining the policies in numerous other countries, including Great Britain, Australia, Japan, and Singapore, he predicted that it would put the U.S. at a disadvantage in the field of stem cell Adapted from [12] and [13] research [3]. Taking into account any recent changes made in international stem cell policies, Stevens’ point is still valid: many other powerful players in the scientific arena have policies that are more progressive than that of the United States. He specifically highlighted Great Britain’s passage of a law allowing limited human cloning for stem cells and the Chinese government’s extensive funding of embryonic stem cell research for treatment of disease [3]. Stevens’ article aptly argues that the United States policies towards this field have been too repressive. Since stem cells have been shown to have the capacity to treat chronic disease, it is puzzling why there is so much taboo about further research in America. Other countries have been more progressive while still avoiding the ethical issues that the United States fears will follow the institution of more lenient regulations—human cloning is still illegal in Great Britain, for example. Stevens’ conclusion is reiterated by an article published by David Terraso of the Georgia Institute of Technology in June 2008. It summarized the results of a study done by Aaron

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UCHICAGO Levine, an assistant professor of public policy at the institute, Based on the evidence of other countries beating the who “found that even though the United States still puts out U.S. to developments in the area of stem cell research and far more research in this field than any other single country, key scientists in the field leaving the U.S. for more hospitable when one compares the amount of research in human embry- countries, it appears that Bush’s policy has hindered America’s onic stem cells to other forms of research in molecular biology scientific progress. Obama has come into power amidst represand genetics, the U.S. lags behind” [4]. Comparatively, the sive funding regulations and hostile attitudes that gives rise UK and Israel—countries that have had positive public and to disadvantages in the U.S. struggle to make progress in this political support of human embryonic research—are produc- field on an international level. He has reacted by repealing ing a greater amount of research in this area than others [4]. Bush’s ban on federal funding. Specifically, he opened up The above data demonstrates that countries with more lenient federal funding for all stem cell lines in existence, but has still attitudes towards embryonic stem cell research are cutting restricted the destruction of human embryos for the purposes into the research that the U.S. could be performing and eat- of this research. At first glance, this seems to be a monumental ing away at its image as one of the premier countries in new move towards a better policy, but in reality, Obama’s new bill research developments, while avoiding the extensive ethical did not introduce any radical policy changes. Furthermore, if issues that the U.S. fears relaxed regulations will bring. Even international competition in the scientific field is overlooked, disregarding the important point that stem cell research has and the focus is instead shifted to the ultimate goal of stem cell the potential to cure debilitating diseases, the United States research—finding cures for chronic disease – what would be has always prided itself on leading the way in research, and the result? Would the medical field be helped by even a radical the current policy is cutting into that well-respected image. shift in stem cell policy considering scientists in the U.S. have A well-supported sub-point of Stevens’ argument about put much effort into finding ways to perform research while the United States’ position is that the current policy will lead staying within policy limits? These are the points that now the country to lose some of its must be examined more closely. premier scientists in the area of A substantial amount of stem cell research. This had althe press coverage of Obama’s The significance of stem ready begun happening in 2003 shift in policy was positive, and cells to the advancement of when he published the article. many viewed this action as a He cites Roger Pedersen of the major step toward eliminating scientific research is already University of California at San the problems felt by stem cell well known, but the debate Francisco, a prominent stem cell scientists. In the Newsweek researcher, as an example because article “A New Stem Cell Era,” about embryonic stem cell use Pedersen decided to relocate to Claudia Kalb summarized the has continued through several Cambridge University as a rechallenges that researchers faced sult of the United States’ frusunder Bush’s policy, such as administrations. trating public funding policies the barriers to collaboration, [3]. Stevens speculated that the construction of separate work more encouraging environment in Great Britain and other spaces for the federally funded portion of labs, and the lack European countries would drive the science away from the of funding for the newly developed, more diverse stem cell U.S. but not out of the international sphere of interest [3], lines [6]. Then, she went on to claim that “All that is likely to precisely the point brought up by Terraso five years later as change under Obama's executive order…Now, scientists say he analyzed the data available for this field. Terraso has stated they can build on the work they've accomplished” [6]. Within his belief that “scientists would prefer clear oversight from the article, Amy Comstock Rick, the CEO of the Parkinson's a federal government that’s supportive of their research” [4]. Action Network and president of the Coalition for the AdAnother interesting case that runs parallel to the possibility vancement of Medical Research (CAMR)—a group formed of scientists abandoning America are the stem cell discoveries to advocate for embryonic stem-cell research—discusses the occurring in other countries which could easily have happened problems faced by scientists under Bush, “If you talk to some in the United States, instead. One such case was described in of the scientists, you hear absurd stories. One guy has green a 2005 Nature article titled “Bush's policy stopped US gain- dots on the things in his lab that are federally funded and red ing stem-cell lead,” which deals with Korea’s establishment dots on the privately funded equipment…You have post docs of the World Stem Cell Hub and the development of a very or young researchers in a lab next door who could benefit by efficient recipe for creating human embryos and extracting learning what's going on, but they can't if they're on federal their stem cells [5]. The authors, Robert Lanza and Ronald training grants and that's how they're paid. So it's been holdGreen, claimed that Korea’s pioneering effort “reflects how ing science back” [6]. There is undoubtedly more funding far the United States has fallen behind its competitors in this available for stem cell research as a result of Obama’s new pivotal area and how much the lack of federal leadership has order, and there has been a very welcoming response in the handicapped US efforts” [5]. Instituting a more progressive scientific community. There is widespread excitement and policy would increase America’s prominence in the field and hope that this will correct some deficiencies regarding both allow its leaders to remain in the United States. federal support and scientific progress in the area of stem cells.

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UCHICAGO However, many are still skeptical of both the significance and the consequences of Obama’s action. Casting doubt on these hopeful sentiments, there are two main opposing arguments: Obama has not reversed any legislative restrictions, and science has taken a different approach to curing diseases that has made embryonic stem cell research less significant. Nature also quoted Amy Comstock Rick, but on a slightly less optimistic note as she discusses the future of CAMR, a lobbying group for stem cell research: “We'd love to go out of business; it's just that the executive order isn't the last issue on our to-do list," [8]. Here, she is highlighting the lack of any radical changes in Obama’s legislative order. FOX News summed up these critiques of Obama’s reversal, “A spending bill that Obama signed on Wednesday explicitly bans federal funding of any ‘research in which a human embryo or embryos are destroyed, discarded, or knowingly subjected to risk of injury or death,’ language that pertains to creation of new stem cell lines” [9]. Even though Obama’s spending bill allows scientists to use many more stem cell lines that are already in existence, it still contains the Dickey-Wicker provision, which bans scientists from creating new stem cell lines. This move was subjected to heavy criticism, but four months after Obama signed the new order, the National Institutes of Health (NIH) issued new guidelines for stem cell research. On July 6, 2009, the NIH declared that new stem cell lines can apply for federal funding if they adhere to strict ethical guidelines [10]. Already existent stem cell lines are still eligible for funding as long as their creation adhered to the “spirit” of the new guidelines [10]. This action by the NIH, which would not have come to pass under Bush’s term, has made a lot of the critique of Obama’s policy irrelevant. Perhaps his original bill was not progressive enough, but it paved the way for greater federal funding and the more progressive research guidelines now in place. However, this change has not addressed all the critics. Further critique comes from those claiming that Obama’s move is merely symbolic because current research has moved away from its reliance on embryonic stem cells. Critics claim that this type of research is no longer the highest hope for patients suffering from chronic diseases. Bernadine Healy, the former director of the National Institutes of Health and the American Red Cross has written in U.S News and World Report that IPSC and adult stem cell research successes have "diminished" the prospect that ESCR is the future of regenerative medicine, and has said that "Even for strong backers of

embryonic stem cell research, [Obama's decision] is no longer as self-evident as it was, because there is markedly diminished need for expanding these cell lines for either patient therapy or basic research," [11]. She has also claimed that adult stem cells have more potential than it was earlier assumed, and scientists have learned to promote their maturation into many cell types, including the brain and heart [11]. Bush’s ban forced scientists to get around the funding issue for embryonic stem cells, and one of the most obvious solutions was to use adult stem cells and explore their full potential. This has certainly increased progress in this area, and now Healy and other critics of Obama’s move are arguing that embryonic stem cells are no longer as useful to patients. Disregarding the case for research for the sake of research, perhaps Obama’s reversal has come too late to have an enormous impact on the medical field. There is no doubt that Bush’s restrictive policy has had a negative impact on the area of embryonic stem cell research, but it has also driven stem cell research in new directions through greater consideration of adult stem cells. Obama’s answer to the problems in this area of research has been to reverse Bush’s policy, and the NIH has made newly created stem cell lines eligible for funding. However, stem cell research has clearly moved away embryonic stem cells as a result of the repressive policies. On the other hand, how can we make predictions and conclusions about an area that has not been fully explored because of funding restrictions? Even though current research is moving away from this topic, there may still be patient benefits there. Furthermore, adult stem cells may be more promising than originally thought, but very few—if any—scientists claim that they have as much potential as embryonic stem cells. The real solution should be for the U.S. to continue developing a more progressive stem cell policy, similar to those in Europe. Meanwhile, ESCR will clearly thrive with the new regulations. At the same time, the country should not focus on embryonic stem cell research as the endall of chronic diseases, and the positive effect of Bush’s policy has been to stretch scientists’ creativity and problem-solving skills to develop new methods of approaching disease, which should not be abandoned, but a balance should be struck.

References:

[7] Lite, Jordan. Obama Ends Embryonic Stem Cell Research Ban. Scientific American: 60-Second Science Blog [document on the internet]; Mar 9, 2009. [8] Nelson, Bryn. Stem Cell Research: After Obama’s Executive Order. Nature. 2009; 43. [9] FOXNews.com. Obama Signs Order Lifting Restrictions on Stem Cell Research Funding. Mar 9, 2009. Available from: http://www.foxnews.com/politics/ first100days/2009/03/09/obama-lift-restrictions-stem-cell-research-funding/ [10] Park, Alice. New Rules Expand Federal Funding of Stem Cells. Time.com. July 6, 2009. [cited July 20, 2009]. Available from: http://www.time.com/time/health/ article/0,8599,1908954,00.html [11] Ertelt, Steven. Former Head of NIH: Embryonic Stem Cell Research Prospects Diminished Now. LifeNews.com [document on the internet]. Mar 8, 2009 [cited May 1, 2009]. Available from: http://www.lifenews.com/bio2778.html [12] http://www.nsf.gov/news/mmg/media/images/stem_cells2_h.jpg [13] http://www.mass.gov/legis/bills/senate/st00/gavel.jpg

[1] 10 Questions for Michael J. Fox. Time. 2009; 173(16): 6 [2] CNNhealth. Q&A: The Stem Cell Debate [internet document]. London, England: CNN; Dec. 9, 2008 [cited April 29, 2009]. Available from: http://www.cnn.com/2008/ HEALTH/11/19/stem.cell.research/index.html#cnnSTCText [3] Stevens, Denise. Embryonic Stem Cell Research: Will President Bush's Limitation on Federal Funding Put the United States at a Disadvantage - A Comparison between U.S. and International Law. Hous. J. Int’l L. [serial online]. 2003 [cited 2009 April 29]. 25(3):623-653. Available from: http://www.pubmed.com [4] Georgia Institute of Technology. Public Funding Impacts Progress of Embryonic Stem Cell Research [document on the internet]. The Institute; 2008 [cited April 30, 2009]. Available from: http://newswise.com [5] Lanza, R, Green, R. Bush’s Policy Stopped U.S. Gaining Stem-Cell Lead. Nature. 2005 [cited April 30, 2009]. 438(422). Available from: http://pubmed.com [6] Kalb, Claudia. A New Stem Cell Era. Newsweek [document on the internet]. 2009 [cited April 29, 2009]. Available from: http://www.newsweek.com/id/188454/page/1

Anna Zelivianskaia is an undergraduate at the Univeristy of Chicago.

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UCHICAGO

Anomie: Post-Academic Science and the Ownership of Knowledge Daniel M. Choi

ertrand Russell states that “philosophy began with The migration of science away from philosophy did not stop Thales,” the pre-Socratic philosopher who may have at this point, as sociological analyses suggested its special predicted a solar eclipse roughly around 585 BCE [1]. status. German sociologist Max Weber carefully observed the The fact that Russell attributes the birth of philosophy to development of science in relation to the development of a a scientific feat signifies the intimate link between science modern capitalist state and reflected on the new role of science. and philosophy. However, what science is today and what In his famous essay, “Science as a Vocation” (1918), Weber it was before the Industrial Revolution makes the link between declares: “Science today is a ‘vocation’ organized in special science and philosophy evanescent. Scientists are no longer disciplines in the service of self-clarification and knowledge so engrossed in the stars above that they do not see a ditch in of interrelated facts” [5]. By placing science in the structure of front of them, as was putatively the case of Thales. Scientist capitalism, Weber implies that science (as an institution, not now must avoid the pitfalls of law, politics, and ethics. They necessarily as a practice) is no longer an isolated entity, but are no longer only concerned with deeply integrated into the soknowledge, as the term “scientist” cial and political fabric of a implies, but also the consequences, country. Although he mainWho owns science? the application, and most of all, the tains that the content of science ownership of knowledge. In the is actually self-contained, as a modern labyrinth of inter-institutional complexes formed scientist engages in “science for science’s sake,” like any vocafrom various groups of public and private entities, the scientist tion, science must produce a commodity. This commodity might inquire : “Who owns science? What does ‘owning that science produces is scientific knowledge. But if it is a science’ entail? Does the ownership of science fundamentally commodity, who owns it? affect its structure?” With the growing disarray surrounding the current social and political features of science, one thing History of Knowledge Ownership is for certain: science is moving away from its philosophical From the Middle Ages to the Industrial Revolution—Beginnings roots towards a direction that challenges the foundations of of Intellectual Property our understanding of the organization of knowledge. “Intellectual property” is an umbrella term for property of intangible objects, which includes authorship, invention, and A Working Definition of “Science” and “Scientific Knowledge” discovery. It would thus also include scientific knowledge. The To understand the precarious position of science in society, problem of ownership of intellectual property finds its roots we must first understand how scientific knowledge is defined in the secrecy practices of craft knowledge in medieval craft and how it can be “owned.” We shall begin our analysis guilds. Pamela O. Long [6] notes that this form of ownership is by exploring the history of the term “science.” ”Science” properly defined as “intellectual” as it concerns intangible craft ultimately derives from the Latin scientia , which means knowledge, as opposed to more familiar notions of property knowledge; it is a term comparable to the Greek επιστήμη, developed by John Locke. Long identifies the first general when our word “epistemology. Aristotle held that strictly patent law passed by the Venetian Senate on March 19, 1474. understood as “demonstrable knowledge,” arose through This general law was an act of protecting the interests of the the use of syllogistic reasoning. By the Renaissance, science city-state, for it was seen that Venice “drew men of diverse had evolved to mean systematic knowledge within a specific origins who possessed very sharp ingenuity and were skilled discipline, usually one of the seven liberal arts [2]. With the in devising and discovering various ingenious devices.” founding of the Royal Society of London in the early modern While the guilds were securing their trade secrets, academia period, emphasis was placed on experimental procedures to was enveloped in textual concerns regarding the authenticity secure claims to knowledge, the kind of practice that conforms of authorship of various ancient and contemporary texts. The to our contempary notion of science. With the increasing type of intellectual property dealt with by scholars is akin to complexity of both experimental devices and the subject matter copyrights as opposed to patents, a distinction made even of natural philosophy, many began to doubt whether those today. As universities dealt with hermeneutics instead of scipeople who pursued natural knowledge should properly be ence proper, or even mathematics for that matter, it would be called “philosophers.” William Whewell, in the early 19th preposterous for an individual to claim ownership of classical century, that a new term was required to distinguish those texts and blasphemous to usurp the Scriptures as one’s own engaged in experimental science from others who also laid claim “property”. In that vein, evolving separately from invention to systematic knowledge. He coined the term “scientist.” [4]. patents, the ownership of scientific knowledge did not belong 12 THE TRIPLE HELIX Fall 2009 UChicagobookfinished.indb 12

UCHICAGO to individuals, but rather to a supposed scientific community. Robert Merton in his seminal essay, “The Normative Structure of Science” (1942), emphasizes this notion of commonality by looking at the (supposedly) unified ethos of science that has four driving forces: universalism, communism, disinterestedness, and organized skepticism [7]. Merton’s definition of communism is not to be confused with Marx’s—he defines “communism” in the “nontechnical and extended sense of common ownership of goods.” Merton argues that the communism in the sciences arises from a “common heritage in which the equity of the individual producer is severely limited.” He regards the claims to equity limited because the acquired knowledge of scientists depends “ upon a cultural heritage to which they lay no differential claims.” The want of “differential claims” mentioned by Merton is best explained by his views on universality in the sciences: “To restrict scientific careers on grounds other than lack of competence is to prejudice the furtherance of knowledge.” According to Merton, science consequently has a common ownership that should be accessible to anyone who wishes to “further knowledge.” Yet as wonderful as Merton’s ideals sound, Merton fails to give historical examples of common ownership; and if anything, the opposite is the case, especially with governmental and industrial encroachment on scientific knowledge.

grew. Although détente saw a relaxation in the government regulation of science, remnants of it still remained. According to a 2006 National Science Foundation (NSF) press release, federal funding of university research was $27.4 billion and industry funding was roughly $2.1 billion [13]. However, the growing influence of the private sector in science cannot be denied as the structure of science is violently shifting.

From the 1970s Onwards: Private Ownership of Science With the declining frenzy of the Cold War and severe economic recessions, government funding to science decreased [8]. According to Corynne McSherry, “the end of the Cold War and the erosion of national culturalism have undermined the research university’s traditional sources of funds and legitimacy” [10]. From being a disinterested scholastic process to a tool for national defense, science has lost its identity as a separate entity. Revisiting Weber’s “Science as a Vocation,” Edward J. Hackett wrote a report on the scientific vocation in the 90s in “Science as a Vocation in the 1990s” [14]. He argues that science in the past was considered “an institution, which is to say, [a] subsystem of society,” but now, it is a mistake to do so—“academic ‘science’ is not ‘society,’ nor does it operate independently of other parts of society.” As explored in the previous section, state has infiltrated science, but as it has withdrawm, private enterprise has begun to creep in, providThe Cold War and State-Ownership of Knowledge ing a purpose for a “purpose-less” vocation [5]. The Second World War ushered in the concept of “governIt would be a mistake to assume that industry initiated ment science” that is federally-funded, primarily with mili- the contact to exploit scientific knowledge. In fact, it was the tary applications [8], a situation that increased immeasurably scientists who began to open the doors for the private ownerduring the Cold War. This corresponded with both a growth ship of science. In 1973, Stanley Cohen and Herbert Boyer of government and postsecondary education, which was ex- of Stanford University filed a disclosure on their invention panded by the federal government in response to the need for of gene splicing, a fundamental molecular biology technique government scientists, as well to a demand for educational that spawned the biotechnology industry. This was one of the reform by working-class veterans, feminists, and civil rights events the sparked the privatization of science, along with the activists [9]. Under the leadership of Vannevar Bush, director Supreme Court cases Diamond v. Chakrabarty (1980), which of the Office of Scientific Research allowed for the patenting of livand Development (OSRD) and ing organisms, and Diamond v. scientific advisor to Presidents Diehr (1981), which allowed for Does an individual scientist Roosevelt and Truman, fedthe patenting of software [10]. eral funding for research grew These cases were monumental have the right to claim private throughout the 1940s, 1950s, turning points in expanding ownership over the benefits and 1960s,; finally, more than the patent law of 1793 written three-fourths of all research in by Thomas Jefferson, which offered by public monies? the United States was financed by claimed that patents could be the federal government [10]. Of obtained for “any new and usecourse with increased government ful art, machine, manufacture, funding, there was an increase in government regulation of or composition of matter, or any new or useful improvement scientific knowledge. One of the biggest projects during this thereof” [15]. era was the development of nuclear technology, which was The issue of patents does not stop at the nature of what is guarded with “excessive secrecy” [11]. National security also patentable, but whether patents can be issued for inventions transformed the image of scientists from the socially disinter- based on the discoveries of others. McSherry argues that ested to citizens who should practice greater civic responsibility invention is a social act and requires the interaction of multiple than the laity, as can be seen in the prosecution of Julius and actors in a complex network of scientists, administrators, and Ethel Rosenbaum [5,12]. lawyers [10]. Perhaps in conformity to Merton’s “communism,” During the Cold War, Merton’s idea of “common owner- scientific innovation usually follows the incorporation of work ship gradually eroded, while notions of knowledge as paid for done by many who have passed through the laboratory before, by the state and conducted in the interest of the state quickly aptly described by Newton as “standing on the shoulders of

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UCHICAGO giants.” And then there is the added problem of the patenting current intellectual property laws, every time a cell in our body of inventions based on research from federal funding. Does an divides, we should be paying a licensing fee to those who hold individual scientist have the right to claim private ownership the patents on certain cellular processes. Granted patents over the benefits offered by public monies? protect the research of the patent holders, giving them due The issue was tackled by Senators Birch Bayh (D-Indiana) credit, but if genes are not considered “products of nature,” and Robert Dole (R-Kansas). Bayh and Dole introduced the then what is? University and Small Business Patent Procedures Act in 1979, On a similar note, ownership of mathematical theorems and which would allow for universities and small businesses to algorithms are uncertain. In 1980, a computer scientist at the obtain patents for discoveries made with federal funding. The Massachusetts Institute of Technology wrote a grant proposal bill passed in 1980, becoming the infamous and often-contested to work on the mathematical basis for programs generating Bayh-Dole Act, and by 2000, academic institutions were, on unbreakable codes and the NSF forwarded the proposal to average, receiving more than $1 billion in royalties and licens- the National Security Agency (NSA), which was interested ing fees [8]. Universities began to in contributing part of the fundadopt a marketplace paradigm, ing so it would require military as patent-generating research was review for national security [17]. Under the current intellectual being emphasized and univerGranted, such an incident seems sity administrators began to hire more appropriately filed under property laws, every time a cell business-savvy individuals [10]. “access to information,” it does in our body divides, we should In her critique of the adoption of bring into question whether the marketplace paradigm, Jenmathematical theorems, the esbe paying a licensing fee to nifer Washburn bitingly refers to sence of abstract thought, can be those who hold the patents on this merger between academia usurped by eminent domain or and economics as the “Marketbought out through patents. Obcertain cellular processes. Model U.” [8], which illustrates viously this occurs everywhere a major evolution of philosophy in the software industry, source behind knowledge ownership. code protection being one of the As we observe the history of the institution of science, hottest issues (cf. Lawrence Lessig, Code 2.0. 2006); and the we see that science is not as immune to social influences in question of whether thought is patentable is surely on the structure, as Merton hoped, or even in ideology, as Weber rise, especially with consideration to the Free Speech Clause desired. The change in the ownership clearly demonstrates of the First Amendment in the Constitution. the changes in the organization of knowledge and perhaps The second type of knowledge ownership we have listed this shows that analyzing the ownership of science will help is the access to information—that is, access to research data and us understand the state of science today. archived knowledge. Access to information is fundamental in the process of science, as scientific knowledge is produced The Relevance of Science Ownership in Scientific Discourse through peer review, loosely defined as the process of referring Two Types of Scientific Ownership—Products and Access scholarly articles to other experts in the field for judgment As we have mentioned before, knowledge has become not only and evaluation before publication. In order for peer review a means to a comodity but a comodity in itself. Ownership of a to work, reviewers must have access to all of the work done physical commodity is expected in any system that incorporates for a particular paper, scrutinizing data and conclusions thorthe notion of private property, but capitalism is unique in the oughly to catch mistakes and possible fraud. Data integrity sense that it also allows for the ownership of the intellectual is a serious issue in scientific discourse, as witnessed by the means of production. Although the distinction between the calling of the Secret Service in the Baltimore Affair in which two types of ownership is artificial (after all, knowledge is scientists were accused of forging data. [18]. Yet the access to knowledge), for heuristical reasons, we will divide them by other scientists’ information is a sensitive issue, as it requires products of science (i.e. physical discoveries/inventions that an implicit trust that competitors will not abuse it. Another are patentable) and scientific information. issue in accessing knowledge is subscription. As it currently We have discussed at length the patenting of scientific stands, most journals charge exorbitant subscription fees that discovery in the previous section. We asked about the extent bar those with little funding and the lay public from accessing of the agency of the individual in scientific discoveries and the discoveries and inventions being reported [19]. This works whether individuals can assert private ownership over knowl- against the notion of a “commons” promoted by Merton, as it edge dependent on a larger community. There are other issues creates economic distinctions between scientists with greater that arise in today’s scientific discourse. First of all, we must funding and those with lesser funding. forming a quasi-elitist ask where we should draw the line between discovery and market governed by money. invention. One example of such an issue is gene patenting, Although the commons ideal of Merton may be admirable, which is the practice of patenting specific gene sequences and there are major practical considerations regarding accessibilthe associated chemical properties of the genes [16]. This has ity to scientific knowledge. Dorothy Nelkin highlights three ghastly (and somewhat humorous) consequences. Under the major conflicts in open access: first, the right of access versus

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UCHICAGO obligations of confidentiality [17]. This corresponds to the question as to what the limits of access are, especially in the face of personal data. In medical and social science studies, for example, confidentiality is of utmost importance to the subjects of the study as a means of protecting their rights. The second conflict is between competitive secrecy versus open communication. As much of the credit in the sciences is based on publication impact, the release of sensitive research information may undermine researchers’ work. Finally, the third conflict Nelkin lists is national security versus scientific freedom, an issue explored in the case of the Rosenbergs and the NSA’s attempt to keep computer science research secret at MIT by invoking eminent domain. By listing the nature of science ownership, we see that there it is complex and rather decentralized. What does this decentralization imply? Anomie and “Post-Academic Science” So far, we have described the meaning, the history, and the problems of the ownership of science. In observing the complex history and situation of science, we see that it is no longer a cohesive institution, but rather, involves a general mix of academic, government, and private interests. The strange bedfellows of science have not gone unnoticed and the universitygovernment-industry knowledge complex has been dubbed a “triple helix”, pointing to a decentralized identity of science. Hackett is very emphatic on this matter, stating first of all that science is not the academe [10, 14]. He further comments on the dissolution of science’s identity using the Durkheimian notion of anomie and the Marxist notion of alienation: “Anomie, the condition of weak or nonexistent norms, is a cultural barrier to the connection between values and behavior. Alienation, the condition of separation from one’s products, one’s colleagues, and one’s self, is a structural barrier to the enactment of cherished values. Their presence in the academe […] suggests that aspects of academic science may be in the process of delegitimation or deinstituationalization” [14]. Hackett’s analysis is bleak, mildly put. We know that ownership of science is decentralized, but does that necessarily References: [1] Russell, Bertrand. The History of Western Philosophy. New York, NY: Simon and Schuster. 1945. [2] Ross, Sydney. “Scientist: The Story of a Word.” Annals of Science. 1964. 18(2) [3]Sprat, Thomas. The History of the Royal-Society of London, For the Improving of Natural Knowledge. 1667. [4] Whewell, William. The philosophy of the inductive sciences. London. 1840. Vol i. [5] Weber, Max. “Science as a Vocation.” Max Weber: Essays in Sociology. Oxford University Press. 1964. [6] Long, Pamela O. “Invention, Authorship, “Intellectual Property,” and the Origin of Patents: Notes toward a Conceptual History.” Technology and Culture. 1991. 32(4) [7] Merton, Robert K. “The Normative Structure of Science.” The sociology of science; theoretical and empirical investigations. (Ed) Norman W. Storer. University of Chicago Press. 1973. [8] Washburn, Jennifer. University, Inc.: The Corporate Corruption of Higher Education. New York: Basic Books. 2006. [9] Slaughter, Sheila. “Academic Freedom and the State.” Journal of Higher Education. 1988. 59(3) [10] McSherry, Corynne. Who Owns Academic Work. Harvard University Press.

imply that science no longer exists? We would hope not! Granted there may be dissolution of identity in the sciences, but that does not necessarily mean that science will disappear. Anomie is a malaise of a society organized under organic solidarity, which is a complex system that cannot be reduced as easily as a society organized under mechanical solidarity—obviously anomie does not imply anarchy. Anomie exists in society, yet society still exists. That means it does not justify the notion that science is completely dead; rather, science is evolving. John Ziman suggests a radical transformation is taking place: “Academic science is undergoing a cultural revolution. It is giving way to ‘post-academic’ science, which may be so different sociologically and philosophically that it will produce a different type of knowledge” [20]. It is difficult to predict what this new structure of knowledge will look like, but perhaps predicting it is not as important as dealing with the current situation—patent reform, clearer definitions of intellectual property, a clearer social role for the scientists is needed. Perhaps then we can overcome the anomie. Conclusions In this paper, we have asked who owns science and found that no one really does. The ownership of science is not something that can be analyzed using simple reductionistic principles, especially when we reach the 1970s when a dynamic complex between different sectors in society confounds our view of science. Then again, what seem to be problems at the moment are only so because of the perspective we are looking from. We are still used to considering science as an academic endeavor since it usually takes place in a university setting. However, the complexity of science as it stands today shows that it has evolved far beyond the domains of the university setting and into an intricate “triple helix.” Perhaps by forecasting the potential of this robust structure of science instead of bemoaning the loss of the academic imprimatur, the post-academic future of science will grow as organically as the nature science studies. Daniel M. Choi is a senior undergraduate at the University of Chicago. 2001. [11] Strauss, Mark. “Behind closed doors.” Bulletin of the Atomic Scientists. 2006. 62(3) [12] Kaufman, Irving R. Transcript of Sentencing Hearing 4 April 1951. http://www. rosenbergtrial.org/cortkaufman.html [13] National Science Foundation. Press Release 06-077. 4 May, 2006. [14] Hackett, Edward J. “Science as a Vocation in the 1990s.” Journal of Higher Education. 1990. 61(3) [15] Kevles, Daniel J. Patenting Life: A Historical Overview of Law, Interests, and Ethics. Yale Law School. 2001. [16] Paradise, J. et al. “Intellectual Property: Patents on Human Genes: An Analysis of Scope and Claims.” Science. 2005. 397(5715) [17] Nelkin, Dorothy. “Intellectual Property: The Control of Scientific Information.” Science. 1982. 216(4547) [18] Hilts, Philip J. “Nobelist Entagled in Fraud Case Resigns as Head of Rockefeller U.” New York Times 3 December 1991, 'late ed.': A1, C1. [19] Swan, Alma. “Open Access and the Progress of Science.” American Scientist. 2007. 95 [20] Ziman, John. “Is science losing its objectivity?” Nature. 1996. 382

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UCHICAGO

The American University and Web 2.0: A New Paradigm? Jonathan Dine

he ability of the Internet to change the way we live tions of higher education, most students, what they term the may seem like a fairly obvious power to us today, but “net generation”, are particularly adept at multitasking and surprisingly, this was not always the case. The potential absorbing many different kinds of information. However, anfor the web to confer omniscience seemed distant even at the other survey from Educause from the same year reported that beginning of the 21st century. . 41% of students wanted faculty However, new developers such to use information technology as Mark Zuckerberg maintained moderately while only 26% of the Web 2.0’s ability to make its innovative spirit, and rather students surveyed wanted faculty information horizontal.... [not than let the web die, it created a to use information technology new form through which people extensively [2]).although this only has] major implications currently experience the Intersurvey suggests that students for businesses and the further net: Web 2.0. Web 2.0’s ability to do not see this new technology make information horizontal—or development of technology, but it as necessary for the classroom, in other words, accessible to evThompson , assistant profesalso has substantial potential for John eryone—and to be user-created sor in and the coordinator of the have major implications for educational computing graduate enhancing higher education. businesses and the further deprogram at Buffalo State College velopment of technology, but it notes that this survey was taken also has substantial potential for enhancing higher education. in 2005, at the beginning of the Web 2.0 phenomenon. Since Current college students, the first generation that was brought that time, students have become increasingly used to techup on the web and now increasingly on Web 2.0 technology, nology being integrated into their daily lives and all types have many different ways of gathering information and thus of information being rapidly accessible; thus it is likely that reached a whole new level of interactivity with raw data. they will demand a higher level of information technology By making information horizontal, the paradigm by which use in the classroom. [3] students learn could fundamentally changed by making them Technology is often seen as a tool; however in some sense, more proactive learners. Web 2.0 and the horizontal spread of information may just The tenets of Web 2.0 are best illustrated with now familiar be “building a better mousetrap.” Kristina Woolsey, chair of websites such as LinkedIn, YouTube, Wikipedia, Facebook, and the advisory group of the Learning, Design, and Technology blogs, all of which allow users to upload their own informa- program at Stanford University, claims that in fact, a new tion, rather than the frontal websites of Web 1.0 where the paradigm of learning has not yet emerged based on the web ability to put information on the web was the exclusive task of and Web 2.0 technologies. She notes that in the university, “at specially trained web developers. Besides these new forms of the core, we are not focused on learning with technologies. websites, the new forms of technology that bring information We are supporting students with computers so that they can much more quickly to a user than in the era of web 1.0. For better take advantage of an educational system that is at its example, Really Simple Syndication (RSS) feeds are a type of heart still an idiosyncratic face-to-face exercise.”[4] web feed used to publish frequently updated works—such Yet, Woolsey’s argument seems non-persuasive when as blogs, new headlines, audio and video. These feeds allow we look at various programs around the country such as the the raw data of the horizontal Internet to be brought to the Duke Digital Initiative. Founded in August 2004 as a way to user personally and on their own terms. encourage creative uses of technology in education and campus Michael Zimmer, in the online journal First Monday, de- life, Duke University handed out 20GB Apple iPod devices scribes Web 2.0 as technology that “presents a blurring of the equipped with Belkin Voice Recorders to over 1600 entering boundaries between Web users and producers, consumption first year students. By the end of the year, the program was and participation, authority and amateurism, play and work, judged highly successful, with the iPods used for a variety data and the network, reality and virtuality… It promises to of academic functions from playing back recordings of classempower creativity, to democratize media production, and room lectures and discussions to “recording interviewees to celebrate the individual while also relishing the power of for fieldwork” in an anthropology course” [5]. According to collaboration and social networks.”[1] the end of year report on the iPod project, “use of the iPod In a 2005 report by Educase, a nonprofit organization has enabled faculty to simplify course delivery and, in some that promotes the use of information technology in institu- cases, to improve course design, and enhance course con16 THE TRIPLE HELIX Fall 2009 UChicagobookfinished.indb 16

UCHICAGO tent.”[5] As a result of the iPod project, faculty members at Duke University have begun to use Web 2.0 technology and new digital media not only as enhancements to their courses but as fundamental parts of their design. Thus, Duke Digital Initiative expanded its reach to many different types of new Web 2.0 technologies, including podcasts and the use of digital media kits consisting of a laptops and camcorders. According to the Initiative, these resources have allowed faculty to institute multimedia final projects and exams rather than a traditional text-based final exam or paper. The faculty at Duke claim that this has led to increased student motivation, more integration of the course materials, and a better quality of student work[[6]] Another example of how Web 2.0 has changed how a university teaches students can be found in 2005 at Columbia Teachers’ College. In this course at Columbia Teachers’ College, student were asked to figure out the implications of web 2.0 technologies to produce societal change. The course itself was run in an entirely web 2.0 fashion: “A central Course Blog disseminated information about the course itself, its assignments, its suggested readings, and other material pertinent to course activities. Using a free distributed classification system called del.icio.us, the class contributed to a repository of research pertinent to our studies. Students also set up personal blogs where they could post individual reactions to the research and the class readings or update the rest of the class about their individual projects”[ i]. [7]This course shows some of the implications of how web 2.0 could change the way universities teach. Rather than having courses where the teacher provides all of the readings and information, the student becomes an active participant in the course. Instead

References: [1] Zimmer, Michael. Preface: Critical Perspectives On Web 2.0.” First Monday [Online], Volume 13 no.3 (March, 2008) [Cited 2009 April 28]; Available from: URL: http://firstmonday.org/htbin/cgiwrap/bin/ojs/index.php/fm/article/view/2137/1943 [2] Kvavik, R.B. and Caruso, J.B. ECAR study of students and information technology, 2005: Convenience, connection, control, and learning. Boulder, Co: Educuase [3] Thompson, John. “Is Education 1.0 ready for Web 2.0 students?” Innovate 2007 [Cited 2009 April 28]; Available from; URL: http://www.innovateonline.info/index. php?viewarticle&id=393 [4] Woolsey Kristina. “Where Is the New Learning?” The Tower and The Cloud: Higher Education in the Age of Computing 212-218 Educause, 2008. [5] Duke University iPod First Year Experience Final Report Duke Digital Initiative

of learning passively, with web 2.0 technology the student becomes an active participant in his own learning. Not only has Web 2.0 entered the classroom and begun to change how courses are structured, but universities are also increasingly using Web 2.0 technology to recruit students. In a Fall 2008 survey of 536 colleges, the University of Massachusetts Dartmouth Center for Marketing Research, found that 41 percent of admissions offices kept blogs and 61% maintained socialnetworking profiles. Further, 54% of universities surveyed also report they monitor the Internet for “buzz, posts, conversations, and news about their institution.”[8] Studies like these show how universities have harnessed the power of Web 2.0 not only to change how they teach their students but also to affect and monitor their public image. Web 2.0 is changing the way information is being processed around the globe, and it is inevitable that it will change the university. Since institutions of higher education intensively disseminate information, they are natural candidates to set the trend in information technologies, and it is clear that a revolution has begun to take place Reproduced from [9] at some of the most elite institutions in this country. Technologies that fundamentally change how people process information, like those at the core of Web 2.0, are rare in human history. This technology is changing how universities teach their students--and beginning to change universities themselves. Jonathan Dine is an undergraduate at the University of Chicago.

[Online]. 2005 June [cited 2009 April 2008]; Available from: URL: http://cit.duke. edu/pdf/reports/ipod_initiative_04_05.pdf[6] Belanger, Yvonne. Summary of DDI Instructional Programs, 2006-2007 Duke Digital Initative [Online]. 2007 July [cited 2009 April 2008]; Available from: URL: http://cit.duke.edu/pdf/reports/ ddisummary_0607.pdf [7] Mejias, Ulises. “Teaching Social Software with Social Software”. Innovate 2006 [Cited 2009 June 14]; Available From; URL: http://www.innovateonline.info/index. php?view=article&id=260 [8] Barnes, Nora Ganim and Mattson, Eric. “Social Media and College Admissions: The First Longitudinal Study University of Massachusetts Dartmouth Center for Marketing Research [Online]. 2009 January [cited 2009 May 3]; Available from: URL: http://www.umassd.edu/cmr/studiesresearch/mediaandadmissions.pdf [9] http://www.enablewebseo.com/images/social-media-web20.jpg

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UCHICAGO

Science: Too Big to Fail? Jonathan Hartley

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either Microsoft or Google. Despite any sparse mandates made by various management committees to improve research, the overall trend stands that applied research is experiencing both cutbacks and neglect in the private sector as a direct result of private investment losing interest. In response to the negative economic growth, which these funding g cuts in research are a symptom of, governments abroad release re stimulus meant in part to boost the number of o projects and research jobs, arguably at the cost of o politicizing science. The 2009 U.S. American Recovery R and Reinvestment Act (ARRA), better known k as the 2009 stimulus package, specifically contains c $10.4 billion dedicated to the U.S. National Institutes In of Health which represents the most significant n annual increase ever in the NIH budget. Major research houses such as the National Science S Foundation (NSF) and the Department of Energy E (DOE) have both seen similar expansion with w these two agencies’ annual funding allocations rising ris to around $7 billion USD and $50 billion USD respectively. re At the outset, it may seem that the net effect may ma be having funding levels left unchanged. No scientist can afford to be naive on this matter. Though the NIH is very well systematized in avoiding conflicts of interest, using scientist peer-review, and setting a mission statement of “objectivity of research” in deciding its allocations, it cannot be forgotten that the NIH and comparable public consortiums are always subject to politicization and corporate influence as much as any other government arm [9]. One way in which this meritocratic paradigm gets jumbled is in the pet projects of legislators. A recent example is Iowan Senator Charles Grassley who is famous for his interest in reducing the

Image courtesy of Bradley French, Central Production.

hat exactly does the current economic downturn mean for science? On the one hand, it might mean research cancellation, grant non-renewals, and less funding. On the other, because of an economic stimulus program originating in February 2009 that is especially generous toward scientific investigation geared toward public-use research, there could be no overall change in the financial status quo. What is certain is that there is a significant change going on specifically y with who controls the allocations and ultimately y decides which areas of science get funding. Al-though this recession has hailed what one mightt call a “bailout” for research, leaving science’s bank k account topped up, it also means that public fund-ing agencies and the government in general now w have an inflated influence on the future of applied d research and basic research with any public-usee slant, which naturally all comes with federal earrmarks attached. Some of the causes of this movement start rt with the shrivelling of private endowments and d privately funded university projects. Universities es have reported on average a 23% contraction in their eir endowments from autumn 2008 well into the first rst half of 2009, including Harvard (-22%), Dartmouth (-18%), Cornell (-27%), and the University of Chicago (-25%) [1] [2][3]. These losses directly translate into budget cuts and funding withdrawals when it comes to research. Just over the past several months, the University of Chicago Medical Center has cut $100 million in costs amounting to 7% of its budget, which included 450 job cuts in the month of April 2009. The effects on research capacity have been dramatic, “freezing the start-up funds of researchers,” firing junior researchers as well as stalling the hiring of any further assistance [4]. The effect on corporate research has been slightly tempered, but still demonstrates the same kind of cutbacks when it comes to applied research. Hewlett-Packard Labs has announced research adjustments to “sharpen their focus” by refining the number of research areas the company has from dozens to only eight [5]. The plan entails reconfiguring its investment toward specific long-term technological innovation instead of more general research. In some cases, research budgets remain intact, as with the example of International Flavors & Fragrances (IFF), a chemical manufacturer of fragrances used in popular cosmetics and, hair care, as well as countless flavours used in prepared foods, pharmaceuticals, and dairy products [6]. Dr. Ahmet Baydar, the head of R&D at IFF, reports that this is because basic research alone is vital in “securing long-term growth” for the firm [7]. To be exact, this research is hardly “basic” in the academic sense, but instead less refined applied work. Traditional basic research is very hard to come by in the corporate sector, being very rarely subjected to political influence, and could only be found today at

UCHICAGO methane emissions of cows. On top of taking action to allocate agencies with public funding (whether or not they are included in NIH research grants to Iowan researchers, he has taken action by the ARRA) are susceptible to earmarks, regulation, and overfundproposing fees on livestock producers to deter these very emis- ing, where there is no need for it. In these cases, jobs and projects sions. Although environmental concerns about methane produced often get created because they are politically popular, not because by cows might seem to legitimize the affair, the Senator’s real they involve groundbreaking science and research. Albeit new interest in agricultural improvement may have reason to draw federal funding does ease overall declines in research, this benefit concern. Reducing methane emissions is known to improve crop comes at a cost of some freedom particularly when politics can yields and Grassley is a U.S. senator is known for his ties to the influence the decisions over who gets a grant and who does not. agricultural industry. Additionally, he is on the Senate Committee More importantly, it affects how much funding certain projects on Agriculture, Nutrition, and Forestry [10]. either are or are not getting due to hidden political factors. Grassley, in a somewhat hypocritical attempt to curtail any Is mass politicization a necessary price that science must then conflicts of interest resulting from the stimulus, also proposed an pay to maintain funding during recessions? Perhaps the is answer amendment to the 2009 U.S. Amerito this is how can sufficient fundcan Recovery and Reinvestment Act ing streams be maintained while requiring all NIH grantees who rekeeping incentives to minimize Is mass politicization a ceive over $250,000 a year to disclose unnecessary and wasteful costs any “significant financial ties with necessary price that science must slanted toward what is not either private sector firms”. Despite the pioneering nor useful research. The then pay to maintain funding source, the amendment would idenquestions that need to be asked tify crucial relationships between repeatedly about allocations are: during recessions? pharmaceutical firms and major What amount is enough? How universities, which have recently much is useful? How much is subeen on the rise. Why academics perfluous? Keeping on the topic of should care about this movement is that instead of relying purely the associations between universities and large drug and pharmaon federal agency grants, foundation grants, or start-up funds ceutical companies, it seems that researchers have to compromise from university endowments, there is a growing dependency between allowing large companies dictate their research focus on corporate backing, which is subject to frequent renegotiation. and having too little funding to generate effective work. It is clear This essentially adds extra risk to research. Uncertainty already almost no researcher can be without funding and so the ideal of exists as to whether a project has any scientific significance, but conducting research with complete independence is fabled. On uncertainty as to whether there will be continued funding is an the other hand, no scientist can practice science without having entirely different story. In addition to renegotiation, there are freedom to pursue their own ideas and creativity. Hence, the the added restrictions set by the corporation going into the part- endgame and what scientists do end up doing is finding common nership, putting corporate priorities before academic ones. To ground between advancing their own independent thought and cite an example, earlier this year, Vanderbilt University signed receiving the adequate funding to carry it out. The same tradeoffs a “$10 million dollar licensing and commercialization deal with apply to accepting government funding particularly when private Johnson & Johnson’s Janssen unit that involves potential anti- institutional alternatives or university endowments swell up due schizophrenia drugs developed by P. Jeffrey Conn”, a researcher to a recession. The ideal situation of having both complete freedom at Vanderbilt who has received over $1 million in NIH funding and financial surplus hardly exists for the average scientist, but over recent years [11]. finding the middle ground between the two is a significant part These problems, however, do not just arise with the NIH; of how one copes with an economic downturn. they manifest in almost every government funded institution. On top of the DOE and NSF, hundreds of other smaller research Jonathan Hartley is an undergraduate at the University of Chicago. References: [1] Harvard Hit by Loss as Crisis Spreads to Colleges. The Wall Street Journal. 2008 December 4; para 1-8. Available from http://online.wsj.com/article/ SB122832139322576023.html. [2] Data Show College Endowments Loss Is Worst Drop Since ’70s. The New York Times. 2009 January 26; para 9-10. Available from http://www.nytimes. com/2009/01/27/education/27college.html?em. [3] University endowment loses quarter of value. The Chicago Maroon. 2009 January 16. Available from http://www.chicagomaroon.com/2009/1/16/universityendowment-loses-quarter-of-value. [4] Research cutbacks anger docs at U of C. Chicago Business. 2009 March 24. Available from http://www.chicagobusiness.com/cgi-bin/article.pl?article_ id=31449&seenIt=1. [5] Riding the Recession The HP Way. BBC News. 2009 March 14. Available from http://news.bbc.co.uk/2/hi/technology/7943300.stm. [6] International Flavors and Fragrances Inc Company Profile. Reuters. Available from http://www.reuters.com/finance/stocks/companyProfile?symbol=IFF.N&rpc=66. [7] IFF increases spending on basic research despite recession. CosmeticsDesign.com. 2009 March 9. Available from http://www.cosmeticsdesign.com/Formulation-Science/

IFF-increases-spending-on-basic-research-despite-recession. [8] Securing a Slice of NIH Stimulus Funding. Genetic Engineering & Biotechnology News. 2009 May 1. Available from http://www.genengnews.com/articles/chitem. aspx?aid=2887. [9] Reminder from NIH on Financial Conflict of Interest Requirements. 2008 August 25. NIH-Alert, U.S. Department of Health & Human Services. Available from http:// grants.nih.gov/grants/policy/coi/requirementes_reminder_20080825.htm. [10] Kohl-Grassley to Seek Disclosure from NIH Grantees. Integrity in Science Watch Week of 02/09/2009. 2009 February 9. Available from http://www.cspinet.org/ integrity/watch/200902091.html. [11] Transcription of Senator Grassley's Agriculture News Conference. 2009 April 28. Available from http://grassley.senate.gov/news/Article.cfm?customel_ dataPageID_1502=20385. [12] Should conflicts mean no NIH grant? TheScientist.com. 2008 September 29. Available from www.the-scientist.com/blog/display/55058/. [13] U.S. Office of Management and Budget. A New Era of Responsibility, National Science Foundation. 26 February 2009: 105-6. Available from WhiteHouse.gov: http:// www.whitehouse.gov/omb/assets/fy2010_new_era/A_New_Era_of_Responsibility2. pdf.

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UCHICAGO

Psychologists and Coercive Interrogation Kara Christensen

eadlines today are filled with reports of the controver- with employers who demand that they use their training for sial interrogation techniques at U.S. military prisons, such unsanctioned interrogations. In addition, psychologists such as Guantanamo Bay. Concerns regarding use with knowledge of any torture-related interrogation have an of such techniques have further been intensified in the last obligation to report it and must comply with any investigafew years by the increased criticism in the media of the use tions into these allegations [2]. Despite this clearly stated, of the simulated drowning technique called waterboarding complete prohibition of the involvement of psychologists for gathering intelligence. in coercive interrogations, there appears to be a disconnect However, due to the current war on terrorism, obtaining between the implementation of the Ethics Code theory and sensitive information has become a necessity for our national its actual practice. security, and one of the only ways to gain such intelligence is Since the Cold War, the United States military has used through interviewing detainees, who are often noncompliant. mental health professionals to aid personnel in interrogations Thus, in order to extract useful knowledge, psychologists are of potentially hostile subjects [3]. At the height of the fear of consulted to aid military investigators with interviewing subjects. Communism, the Debility, Dependency, Dread (DDD) model However, this level of involvement is controversial because was developed to psychologically push subjects towards sharof the ethical conflict that arises when clinical psychologists, ing information. In this technique, subjects experience strong whose job is to alleviate suffering, permit mentally harmful feelings of helplessness or loss of identity resulting from sleep questioning. deprivation or sensory deprivation, The controversy of the involvewhich in turn creates high levels of ment of healthcare professionals in dependency towards the interrogaPsychologists may military interrogations was further tors [3,4]. As of 2005, according to provide assistance in intensified in April 2009 with the rea book published by Physicians for lease of memos from the Department Human Rights, several new methgathering intelligence of Justice’s Office of Legal Council, ods of psychological coercion were by developing dating between 2002 and 2005, that in widespread use in U.S. facilities: described the extensive cooperation prolonged isolation, sexual and culinterrogation strategies, of both psychologists and physicians tural humiliation, sensory distortion creating models of in the coercive interviews of suspected (painfully loud music, hypothermia, terrorists [1]. Specifically, these memos of masks) and self-inflicted pain potential terrorist behavior, use described in detail the participation (such as being forced to hold stressand creating new lines of of professionals trained in the use positions) [5]. of psychological techniques in the Psychologists have also used communication between planning and execution of detainee their interviewing training when intelligence agencies. interrogations at Guantanamo Bay aiding in interrogations. Since posiprison, a practice now prohibited by tive reinforcement, or a professional a 2006 declaration by the American relationship between the client and Psychological Association [1,2]. the psychologist, is widely considered to be more effective The APA’s current position on this issue, as defined by this than negative reinforcement or punishment (as in the use of declaration, is firm regarding the participation of its members coercive techniques), psychologists would be considered an in coercive interrogations. Psychologists are not permitted invaluable resource when attempting to retrieve information to provide the military with information that can be used to [9]. A new field has arisen from the use of psychologists in this exploit personal vulnerabilities in detainees [6]. In the 2007 manner termed “operational psychology” in which “enemy reaffirmation of the APA’s position on torture, they declared capabilities, personalities, and intentions” are evaluated to that there is “an absolute prohibition against psychologists’ determine military threats [10]. Psychologists’ participation knowingly planning, designing, and assisting in the use of in this manner is sanctioned by the APA and even would seem torture and any form of cruel, inhuman or degrading treatment to be more effective in eliciting information than the use of or punishment;” and furthermore, there are no circumstances torture; despite this knowledge, stress-based interrogations in which this is ever acceptable, including a state of war [2]. have remained widely utilized. They also “[affirmed] the prerogative of psychologists under The military uses the skills of these operational psycholothe Ethical Principles of Psychologists and Code of Conduct gists in three main areas: intelligence, target hardening, and (2002) to disobey law, regulations or orders when they conflict profiling [8]. Psychologists may provide assistance in gathering with ethics ” [2]. Thus, psychologists must refuse to comply intelligence by developing interrogation strategies, creating

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UCHICAGO models of potential terrorist behavior, and creating new lines of communication between intelligence agencies [8]. They may also use their training in behavioral techniques to assist with target hardening, which is the securing of assets, such as transportation or tourist targets, against potential attack [15]. In this way, they can perform research in the use of screening systems, as in airport security. They may also use profiling in order to construct and use psychological and demographic templates for the identification of potential terrorists. Psychologists may act in a behavioral science research capacity in assisting with homeland security, as well as provide more direct and non-research based consulation. While the American Psychological Association considers the use of techniques such as demographic profiling ethically acceptable, the newer use of more coercive techniques, such as waterboarding and sensory deprivation, has come under intense scrutiny [1]. Opponents of such techniques argue that psychologists violate their tenant to do no harm by their consultation in such manners, and thus take advantage of their training [3, 6, 7, 11]. For example, in the interrogation of suspected terrorist Abu Zubaida, DoJ memos reveal that staff psychologists, upon learning of Zubaida’s intense fear of insects, suggested an interrogation technique that would involve Zubaida being placed in a confined area with them [1]. In this example, psychologists deliberately attempted to utilize Zubaida’s personal communications of fears to achieve military goals. Such involvement, partisans argue, violates the ethical obligations of the psychological profession to alleviate mental harm, not to inflict it [9, 12]. However, a complication arises from the situation in which the psychologist is under the employment of the U.S. government or military. While the psychologist may be consulting the detainees for mental health treatment, some consider the U. S. military to be their actual client to whom their obligation to do no harm is owed [9, 10, 12]. In this argument, by preventing future harm to the nation and by creating the most efficacious method of obtaining information, psychologists serve their client appropriately. Furthermore, in this situation, while the APA may consider the psychologist to be acting in an unethical manner, it is also possible that these rules do not technically apply to him or her [9]. If one is working for the federal government, there is no obligation to follow these APA guidelines unless they are also incorporated into the regulating body of the state in

which the psychologist is licensed [9]. The APA is a voluntary organization, which means that one is only required to abide to its rules if one is a member, or if one holds a license in one of the states that requires compliance with the Ethics Code. In about half of the states, the Ethics Code is not incorporated into the statutes of licensing bodies [9]. There are also logistical complications in complying with the code, such as the power structure within the military. As some psychologists may in fact be officers in the military, there may not be a chain of command in which the psychologist can report potential concerns of ethics violations without fear of career retribution[13, 14]. Most importantly on an ethical standpoint, the necessity of preserving confidential information may be a confusing factor. Since such interrogations are highly classified, psychologists may not have an appropriate network in place for discussing such concerns outside of their own peers with similar classified statuses. They also may be unfamiliar with how their suggestions and observations will be used due to the necessity of compartmentalization between groups of different security clearances and purposes [14]. In this manner, psychologists may not themselves possess such a clear, unstressed, or non-coercive view of these situations required to make ethical decisions. It is clear that there exists some legal and ethical ambiguity surrounding the use of mental health professionals in coercive interrogations. The obligation of the psychologist to not inflict lasting mental harm upon the detainees and the desire to prevent future harm to United States citizens have to be balanced in such a way that information is obtained in a manner that is efficient and non-cruel. Yet now it seems that the most critical issue regarding the participation of psychologists in such interrogations is the question of why these practices continue despite bans on torture and questions about their efficacy. It is clear that international law and domestic ethical codes have not been sufficient to stop these practices, thus, investigations into incidences of coercive interrogation should instead focus on the factors and climate that contribute to their perceived necessity by the military. In order to truly understand and resolve this apparent ethical issue for psychologists, it will be necessary to understand and address the factors that go into the decisions to violate such prohibitions.

References:

[7] Levine, A. “Collective Unconscionable “ Washington Monthly 2006. Available from: http//washingtonmonthly.com/features/2007/0701.levine.html. [8] Stevens, M. “What Is Terrorism and Can Psychology Do Anything to Prevent It?” Behav Sci and Law 2005 23: 507-26. [9] Gravitz, M. “Professional Ethics and National Security: Some Current Issues.” Consulting Psychology Journal: Practice and Research 2009; 61(1) 33-42. [10] Kennedy, C., Zillmer, E. Military Psychology: Clinical and Operational Applications. New York: Guilford Press; 2006. [11] Munsey, C. The Debate Continues. Monitor on Psychology 2008 p. 16-17. [12] Carter, L., Abeles, N. “Ethics, Prisoner Interrogation, National Security, and the Media.” Psychological Services 2009: 6(1) : 11-21. [13] Steinberg, A. “The Apa and Coercive Interrogations: Psychoanalysis Fights for an Ethic of Do No Harm.” Psychologist-Psychoanalyst 2008 p. 49-50. [14] Zimbardo, P. “Thoughts on Psychologists, Ethics, and the Use of Torture in Interrogations: Don’t Ignore Varying Roles and Complexities.” Analyses of Social Issues and Public Policy 2007: 7(1): 65-73

[1] Warrick, J. & Finn, P. “Psychologists Helped Guide Interrogations.” Washington Post 2009. [2] APA. “Reaffirmation of the American Psychological Association Position against Torture and Other Cruel, Inhuman, or Degrading Treatment or Punishment and Its Application to Individuals Defined in the United States Code as “Enemy Combatants.” [document on the Internet] Ed. American Psychological Association. Available from: http://www.apa.org/governance/resolutions/councilres0807.html, [3] Soldz, S. “Healers or Interrogators: Psychology and the United States Torture Regime.” Psychoanalytic Dialogues 2008 (18) Publisher, etc? p. 592-613. [4] Farber, I., Harlow, H., West, L. “Brainwashing, Conditioning, and Ddd (Debility, Dependency, and Dread).” Sociometry 1957; 20(4) : 271-85. [5] Physicians for Human Rights. Break Them Down: Systematic Use of Psychological Torture by U.S. Forces. Cambridge, M.A.; 2005. [6] Okie, S. “Glimpses of Guantanamo: Medical Ethics and the War on Terror.” N Engl J Med 353 (2005): 2529.

Kara Christensen is an undergraduate at the University of Chicago.

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ASU

The Cost of Treating Heart Failure Patients with Mechanical Circulatory Support: Do Outcomes Justify the Physical, Emotional and Financial Burden? Eric M. Anderson

espite modern treatment options and a significant number of ongoing research efforts worldwide, heart disease remains one of the most significant killers of people in the developed world. An increasing number of Americans suffer from end-stage heart failure, a condition in which the heart cannot pump an adequate amount of blood throughout the body to sustain normal quality of life, with nearly 550,000 newly diagnosed cases each year. Despite optimum medical treatment, approximately 280,000 people die of heart failure every year [1-4]. Heart failure patients are often treated with ionotropic drug therapy, intraaortic balloon counterpulsation, mechanical circulatory support (MCS), and heart transplant (HTx), in increasing order of aggressiveness of treatment. Ventricular assist devices (VADs) and total artificial hearts (TAHs) provide mechanical circulatory support for patients suffering from end-stage heart failure that is unresponsive to other medical and surgical interventions. VADs and TAHs can be utilized as either a bridge to heart transplantation or as standalone therapy for patients who are ineligible for cardiac transplant. Although the use of MCS devices have improved heart failure patient survival duration and quality of life, many patients still suffer from a severe disease state and are cared for in the intensive care unit (ICU). The physical, emotional, and financial burden as a result of poor health status, extended ICU stays, long-term inpatient inpatiien entt care, ca are, and intensive in-home care can ca an ta take ake ke a toll tol oll on o p patients attie ient ntss and nt and thei th their heirr fa fami families m lliiess mi over time, ov ver tim im me, e lasting las a ti ting g weeks weeeekss and an nd d in in some some so m cases me even years [1]. Currently, many ev ven n yea ears [1] 1. C 1] urreenttly ur ly, ma m ny medical ca al professionals hold that the physical and an nd em emotional motional stresses stresss esplaced placed e

on patients as a result of MCS device placement and operation are necessary since the patient would otherwise die of heart failure. However, there are a number of medical professionals and ethicists who have begun to question whether the benefits of this therapy generally outweigh the costs [5,6]. Managing the care of heart failure patients is of increasing interest to the medical community and the United States as a whole as patient quality of care expectations increase and gross medical expenditures continue to rise sharply. In this societal context, it is important to consider the impact of the utilization of medical procedures that are highly invasive, have a high cost, and are associated with a high risk. End-stage heart failure patients often require significant medical intervention to improve their medical outlook, and many people in the medical community question whether patient outcomes justify the use of drastic treatment options such as mechanical circulatory support despite the statistically significant improvements in survival duration attained. In addition, this stage of the disease can develop quickly, and treatment decisions must sometimes be made rapidly. As a result, it is important for the medical community to carefully consider the potential effects, both long-term and short-term, of applying some of the most drastic modern treatments for heart failure patients. Accordingly, it will be important to deliberate on the development of a consistent method of adequately informing patients of potential and expected outcomes so that patients and their families can make informed decisions quickly. In considering the use of mechanical circulatory support for end-stage heart failure patients, it is important to assess whether the physical, emotional and financial costs incurred by the patient as well as the financial costs carried by the health care system as a whole are justified by the length and quality of life increases resulting from the use of this therapy. Facing Growing Health Care Costs: Impact of Heart Failure Currently, the United States has the highest health care costs as a percentage of total gross domestic product (GDP) of any country in the world [7]. However, the United States boasts only mediocre health outcomes by a number of standards when compared to most countries throughout the world that have highly advanced economies. Since 2004, health care costs as a percentage of GDP have increased from 15% to 17%, and it is projected that total health care costs will skyrocket from $2.4 trillion in 2008 to $4.3 trillion by 2016 [7]. A significant driver of rapidly increasing total health care costs is the increasing amount of high-cost medical services being provided to those who need them most. Statistics of health expenditures in the U.S. indicate that the top 1% of

Reproduced from [16]

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ASU Reproduced from [17]

health consumers (those who spend the most) account for 25% of expenditures, and the top 5% of health care consumers account for 50% of expenditures [8]. These staggering numbers suggest that health care costs could be dramatically reduced if the costs of treating the sickest of patients could be minimized. Approximately 5 million people in the United States currently suffer from some stage of heart failure ranging from only minor loss of blood-pumping function to significant loss of blood flow [3]. Additionally, hospitalizations for heart failure have increased by over 275% in the past 25 years [4]. The U.S. Centers for Disease Control and Prevention (CDC) estimate that the total annual direct cost for heart failure in 2006 is $29.6 billion in the United States, equating to a cost of almost $6,000 per patient per year [9]. Although the annual total direct health care costs associated with treating heart failure are relatively high, the costs on a per person basis are fairly reasonable. This can be primarily attributed to the fact that many patients’ heart failure is successfully managed using drug intervention alone, which commonly includes inotropes, ACE inhibitors, diuretics, vasodilators, and beta blockers. Generally, inotropes and beta blockers work to increase the efficiency of the heart by improving coordination of muscular contraction of the heart while ACE inhibitors, diuretics, and vasodilators affect blood volume and blood flow throughout the body. Some of these agents can be purchased for as little as a few dollars a month, and they can have a significant effect on improving patient outcomes if prescribed early on in the disease

process. However, the costs associated with the placement of a VAD and the subsequent hospitalization often exceed $200,000 [10,11]. Relative to the average cost of treating heart failure patients, the use of VAD therapy is exceedingly high. Although it may seem unreasonable to provide some individuals with a significantly higher cost care regime than others, the high costs associated with treating near-death heart failure patients may be justified if the benefit conferred to these individuals is significant in terms of both the improved length and quality of life experienced. Currently, it is challenging to quantitatively assess what improvements in length and quality of life are significant, contributing to a significant problem in developing a simple, straightforward cost-benefit model describing the use of MCS treatment. Use of Mechanical Circulatory Support in Heart Failure Heart failure is a condition in which the heart cannot pump an adequate amount of blood and, consequently, oxygen to meet the needs of individual organs throughout the body. The diagnosis of heart failure does not mean that the heart has stopped completely, but rather that it is failing to pump blood the way that it normally would throughout the body. Symptoms of heart failure include shortness of breath during mild or usual daily activities, weight gain with swelling in the legs, ankles, or lower back from fluid buildup in the body, and general tiredness and weakness [4]. Failure of the heart often results from damage to the muscle tissue associated with the pumping action of the

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ASU heart, also known as the myocardium. Two of the most common causes of heart failure are coronary artery disease and hypertension, both of which commonly result in long-term damage to the myocardium. In severe cases of heart failure, the heart is not able to deliver an adequate supply of oxygenated blood to peripheral tissues, resulting in ischemia, which is a decrease in blood flow to tissue that results in inadequate tissue oxygenation. MCS devices effectively replace the pumping action normally carried out by one or both of the ventricles in the heart [12]. In the case of ventricular assist devices (VADs), the function of the left ventricle, which is to pump oxygenated blood through the body, can be performed by a left VAD (LVAD). Less commonly, the function of the right ventricle, which is to pump deoxygenated blood to the lungs, is supplemented by a right VAD (RVAD). A biventricular assist device (BiVAD) can be used to support the function of both ventricles while a total artificial heart (TAH) is used to replace the function of the ventricles after they have been surgically removed. Mechanical circulatory support (MCS) devices have a number of uses in the treatment of heart failure patients. The primary use of MCS in the United States is to provide heart failure patients with life-sustaining circulatory support until they are able to receive a heart transplant (HTx). In many cases, severe heart failure patients’ health deteriorates rapidly, and they require circulatory support before a donor heart becomes available. This bridge-to-transplant (BTx) application of MCS provides many heart failure patients intermediate support [10]. A second use of MCS is in a bridge-to-recovery (BR) setting, in which patients are expected to experience myocardial recovery over time. Some heart failure patients suffer from severe acute pathology, such as a viral infection, that results in decreased natural oxygen perfusion to the heart. A lack of oxygenation in cardiac tissues can cause the heart to lose a significant amount of its pumping capacity, and the patient may be at risk for death as a result of acute heart failure. However, the use of a VAD can provide me, potentially life-sustaining cardiac support for a period of time time, he patient’s cardiacc usually for up to a few months, allowing the rdial ttissues iisssues s hav ve tissues to recover. Once the patient’s myocardial have ve VAD support ve suppo port rt recovered adequately, it is possible to remove vide sufficient because the patient’s heart is again able to provide cardiac output independently. The newest use of MCS atory sup up-is in heart failure patients who require circulatory supthe h r port to survive but do not have the potential to eit either ear artt recover native myocardial function or receive a he heart (D DT) T, transplant. In so-called destination therapy (DT), vicee heart failure patients are placed on an MCS device or and rely on the support of this treatment for the rest of their lives [11]. Challenges with Mechanical Circulatory Support Bridge-to-transplant (BTx) treatment is the most established and widely accepted use of MCS. In a recent study of the use of the TAH as a bridge to transplant, a 69% BTx success rate was observed, indimost of these patients survived to HTx

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[13]. Most BTx patients experience MCS for fewer than 90 days before they are able to receive a heart transplant. Because BTx treatment has relatively high success rates and has a defined medical end-point that does not require permanent circulatory support, this use of MCS is not highly controversial. Many of the patients who survive to transplant go on to live for months to years following recovery after HTx and live relatively mobile lives during this time. One of the most significant drawbacks to BTx treatment, however, is the potential for the development of infection, a risk which is unfortunately inherent in any use of an MCS device [12]. Although the surgeries and recovery efforts involved in both the MCS placement and HTx portions of BTx treatment place a significant amount of emotional and physical stress on both the patient and family, the generally quick resolution of the patient’s health status reduces the associated suffering and renders the treatment more acceptable. Additionally, potential BTx patients’ health status tends to deteriorate less rapidly, allowing a reasonable amount of time for the patient and family to assess whether BTx treatment is likely optimal [14]. Bridge-to-recovery (BR) treatment is more varied in its clinical success and its value to the patient. In most potential BR cases, the patient is suffering from severe acute heart failure, and there is relatively little time to decide whether MCS treatment is optimal. In a best-case scenario, a patient is able to recover in a few weeks to months following BR treatment and is able to return to a hemodynamically stable state that does not require MCS. In this case, MCS is extremely valuable because it greatly improves the patient’s life expectancy, and the general quality of life following recovery is usually very good. However, there are many cases in which a patient who is placed on BR treatment does not recover completely and must be switched to either BTx or DT treatment. While switching to BTx is not the optimal case, it is relatively acceptable for the reasons described above. Reproduced from [18]

cating that tha haat

ASU Unfortunately, there are a number of patients who do not recover with the utmost care. While the use of BTx treatment is becoming following MCS treatment and are not eligible for transplant, leav- increasingly justifiable because of its reliability and short-term ing health care providers in a position where they must guide the use, BR and DT must be used with more caution. BR treatment treatment toward DT. Continuation of MCS treatment in the DT can be extremely useful for patients who are likely to experiformat can often only provide the patient a minimal quality of life ence myocardial recovery. However, BR treatment can become during an only minimally increased life expectancy of weeks to a significant burden for patients who do not experience recovery months, during which the patient’s family often must endure the and who are not eligible for transplant. Most patients begin BR grief of watching their loved one therapy with the expectation of suffer and shoulder the significant eventually recovering to the point [T]he total annual direct cost cost associated with hospital care. that MCS is not necessary, and a DT treatment was shown to number of these individuals who for heart failure in 2006 is $29.6 improve the quality and duration do not recover well may have billion in the United States, of life for select patients who were chosen to pursue an alternate suffering from end-stage heart treatment path requiring lower equating to a cost of almost failure and were not eligible physical, emotional, and finan$6,000 per patient per year. for transplantation because of cial costs if they had foreseen the advanced age or comorbidities poor response. Many consider by the Randomized Evaluation DT treatment to be problematic of Mechanical Assistance for the Treatment of Congestive Heart partially because its defined end-point is death, and the value of Failure (REMATCH) trial. This trial showed that incidence of the increased short-term survival is debatable. short-term survival (less than two years) was significantly higher Ultimately, patients retain their autonomy to decide whether for those patients on DT treatment, and a significant number of the use of MCS is appropriate for them. In order for patients and patients experienced greater reported quality of life while on MCS their families to make effective rapid decisions regarding MCS [15]. While many of these patients experienced a better short-term device placement, it is essential that health care providers give life expectancy than heart failure patients who did not undergo sound and insightful advice into the expected and potential costs DT treatment, it is important to recognize that having DT treat- and benefits of treatment. However, even when absolute care ment places a limit on one’s expected quality of life. Ultimately, is taken to educate the patient and family regarding treatment patients and family members must decide whether the physical options, it may not always be feasible to obtain truly informed and emotional hardship experienced as a result of DT treatment is consent if this information is not fully understood. As a result, outweighed by the benefits associated with increased short-term some suggest that there are situations in which the health care survival. Overall, DT is controversial because the expected end- providers are in the best position to decide whether MCS treatpoint is having the device in place for the rest of one’s life rather ment is likely the optimal course of action. As the financial state than a return to relying on the circulatory support of a biological of health care in the United States continues to worsen, some heart (recovered or transplanted), which would ultimately allow experts hold that it may eventually be necessary to reduce the the person to live a longer life with higher quality. level of freedom to access treatment currently afforded to patients Mechanical circulatory support (MCS) is a remarkable tech- potentially in need of MCS device placement and to place more nology that has the potential to continue to greatly enhance the responsibility into the hands of health care providers to ensure length and quality of life experienced by end-stage heart failure that health care resources are only consumed by those who are patients. Many argue, however, that the high physical, emotional, likely to benefit significantly from treatment. and financial costs associated with the use of these treatment modalities necessitate that decisions regarding their use be made Eric M. Anderson is currently a undergraduate at ASU. References [1] Camp D. The left ventricular assist device (LVAD): a bridge to heart transplantation. Crit Care Nurs Clin North Am 2000;12:61-8. [2] Goldstein, DJ, Oz MC, Rose EA. Implantable left ventricular assist devices. N Engl J Med 1998;339:1522-33. [3] American Heart Association [Online]. 2008 [cited 2009 Apr 25]; Available from: URL: http://www.americanheart.org/downloadable/heart/1200078608862HS_ stats%202008.final.pdf [4] Centers for Disease Control and Prevention [Online]. 2006 Aug 30 [cited 2009 May 15];Available from: URL: http://www.cdc.gov/dhdsp/library/fs_heart_failure.htm [5] Bramstedt KA. Destination nowhere: a potential dilemma with ventricular assist devices. ASAIO J 2008;54(1):1-2. [6] Rizzieri AG, Verheijde JL, Rady MY, McGregor JL. Ethical challenges with the left ventricular assist device as a destination therapy. Philos Ethics Humanit Med 2008;3 (20):1-15. [7] National Coalition on Health Care [Online]. 2009 [cited 2009 May 5]; Available from: URL: http://www.nchc.org/facts/cost.shtml [8] Berk ML, Monheit AC. The Concentration Of Health Care Expenditures, Revisited. Health Aff. 2001; 20(2):9-18. [9] United States. Centers for Disease Control and Prevention. The Burden of Heart Disease and Stroke in the United States: State and National Data, 1999. Atlanta, Georgia; 2004.

[10] DiGiorgi PL, Reel MS, Thornton B, Burton E, Naka Y, Oz MC. Heart Transplantation and Left Ventricular Assist Device Costs. J Heart Lung Transplant 2003;24(2):200-4. [11] Oz MC, Gelijns AC, Miller L, Wang C, Nickens P, et al. Left Ventricular Assist Devices as Permanent Heart Failure Therapy. Ann Surg 2003;238(4):577-85. [12] Osaki S, Edwards NM, Velez M, Johnson MR, Murray MA, Hoffmann JA, Kohmoto T. Improved survival in patients with ventricular assist device therapy: the University of Wisconsin experience. Eur J Cardiothorac Surg 2008;34:281-8. [13] Amabile O, Copland J, Smith R, Nolan P, Sethi G, Smith C, Bose R, Tsau P, Covington D, McCarthy M. 196: Single Center Experience with 104 Total Artificial Heart Implant Patients. J Heart Lung Transplant 2009;28(2):S134. [14] Dew MA, Kormos RL, Winowich S, Stanford EA, Carozza L, Borovetz H, Griffith BP. Human Factors Issues in Ventricular Assist Device Recipients and Their Family Caregivers. Eur J Cardiothorac Surg 2008;34:281-8. [15] Rose EA, et al. Long-Term Use of a Left Ventricular Assist Device for End-Stage Heart Failure. N Engl J Med 2001;345(20):1435-1443. [16] http://www.fda.gov/ohrms/dockets/ac/04/briefing/4029b1_FINAL_files/ image006.jpg [17] http://www.nhlbi.nih.gov/health/dci/images/heart_coronary_artery.gif [18] http://www.nasa.gov/centers/langley/images/content/345206main_bryantheartfda-1600.jpg

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CORNELL

Overeager Genomics Andrew Fister

n 2001, the first two publications of portions of the human mutations play a small role, raising fitness of mutant tissue genome incited huge enthusiasm in genomic research which toward an aggregate effect that ultimately leads to cancer promised to bring drastic changes to methods of genetic growth [4,5]. Similar studies are being performed with other screening [1,2]. The birth of genomic personalized medicine complex diseases, including autism and schizophrenia [6,7]. brought about great scrutiny of a practice common prior to its These yielded results showing remarkable complexity in the inception, known as race based medicine. According to this genetic linkage of the disorders, with significant indication of practice, a patient would be treated with drugs and treatments linkage in various regions of a number of chromosomes. As deemed effective in similar cases with members of the same with studies of cancer genomes, mutations in certain genes race. The shortcomings of this system are clear, for one’s may shw higher correlation with some respective disease, but genetic makeup cannot be fully deduced according to race the complexity of these diseases far transcends a mutation at [3]. In a study exemplifying this idea, Drs. James Watson a single site. While in some cases specific drugs are used to and J. Craig Venter had their genomes sequenced to test for treat disease attributed to known genetic markers [5], misinfervariance in genes relating to drug metabolism. While both ence of causation could have costly, or even deadly, effects. men are Caucasian, Dr. Watson proved to have an allele rare in Even so, there is substantial public demand for screening of Caucasians, but common in East Asian populations. Whereas these disorders. genomic personalized medicine allowed this gene, which would It Must be Good Marketing… [T]he practice of genomic cause variance in metabolic rate An interesting side effect of defor antidepressants and the personalized medicine in the place of creased cost of genetic screening cancer drug tamoxifen, racethe emergence of direct-torace-based medicine will encourage isconsumer based medicine would have (DTC) genetic testing ignored the possibility of the further research into both treatment companies. These companies, difference in these alleles and which also emerged shortly after and causation of disease. led to improper treatment, the sequencing of the human perhaps death. In some cases, genome, offer a wide variety tendencies for specific diseases of services. For $399 the comor varying levels of drug metabolism prevailed to the point that pany 23andme will send consumers a testing kit containing a drugs had been produced for a specific race’s symptoms. The tube in which the consumer collects a DNA sample and then authors of this study fear that the development of race-based mails it back to a lab. The lab analyzes the DNA and posts drugs may stymie further research into the genetic basis of genomic information online for the customer to view. While disease [3]. Therefore the practice of genomic personalized the test allows customers to explore their ancestry from a medicine in the place of race-based medicine will encourage genomic standpoint, it also analyzes risk factors based on further research into both treatment and causation of disease. the customer’s DNA sample. The service currently offers Nonetheless, the results of such screening must be interpreted clinical reports on 29 diseases or traits determined to have with great care as research continually unveils shockingly significant evidence for genetic linkage based on multiple complex models of linkage between genes and disease. large studies. Among these clinical reports are analysis of breast and prostate cancer risk. Another 81 diseases and traits Struggling with Complexities are analyzed, but are offered with the caveat that linkage has That Grail of medical enterprise, the quest for a cure for cancer, not been determined with the same degree of certainty as has served as a font for the difficulties we face in adequately those diseases described in the clinical reports [8]. Of course, characterizing linkage. Studies have been performed in which the appeal for this sort of genetic risk analysis is clear; some cancer patients have their normal genomic sequence compared customers may be curious to know (a rough estimate of) the against the sequence of genetic material in the cancer tissue in likelihood that they will develop a disease. Others may find order to draw a correlation linking mutation of certain genes to gratification in having the option to have their genomic data cancer development [4,5]. A graph of frequency of the mutant utilized in furthering research efforts. However, it is of great genes present in the cancer tissue exhibits a “mountain and importance that the results of these tests are taken with a grain hill” pattern, meaning that certain genes (mountains) seem to of salt. As is explained on their website, “23andMe … does have greater linkage to tumorigenesis, while other genes (hills) not sequence your entire genome or perform predictive or are also correlated, but to a much lesser degree. However, diagnostic tests… [We] cannot tell you whether you actually studies indicate that the development of cancer is less linked have a specific disease, or whether you will develop a specific to “mountains” than was initially surmised. Instead, all of the disease in the future” [8].

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CORNELL Other concerns of the process are centered on the validity of the tests DTC companies perform. For example, the complexity of breast cancer shown in the aforementioned studies implies that these DTC tests analyze risks based on tenuous correlations [5] [9]. In addition, regulation of these tests is extremely lax, current interpretation of the Clinical Laboratory Improvement Amendments “does not evaluate clinical validity of the tests [the] laboratories offer, instead leaving it up to the laboratory director’s determination” [9]. This means that the actual correlation between genetic linkage to a disease is not regulated save by the company itself. Quite discomforting, considering the psychological impacts of bleak test results. Stopping a Brave New World While genomic personalized medicine serves a valuable role in the modern scientific community, the prevalence and availability of these at-home genetic tests raises a legitimate fear of genetic discrimination. It is worthy of note that to date, no cases related to genetic discrimination in the workplace have been taken to federal or state courts in the U.S., but that does not mean that it isn’t happening [12]. In 2001, the Equal Employment Opportunity Commission resolved a situation in which the Burlington Northern Santa Fe Railroad secretly tested employees for genetic Reproduced from [13] predisposition for carpal tunnel syndrome, and threatened to terminate one employee who refused the test [12]. Fortunately, the Genetic Information Non-Discrimination Act of 2008 (GINA) References: [1] Venter, JC, et al. The sequence of the human genome. Science Feb. 16 2001; 291(5507): 1304−1351. [2] International Human Genome Sequencing Consortium. Initial sequencing and analysis of the human genome. Nature Feb. 15 2001; 409: 860−921. [3] Ng, PC et al. Individual Genomes Instead of Race for Personalized Medicine. Clinical Pharmacology & Therapeutics 2008; 84(3): 306–309. [4] Parmigiani, Giovanni et al. Design and analysis issues in genome-wide somatic mutation studies of cancer. Genomics Jan 2009; 93(1): 17-21. [5] Wood, Laura D. et al. The Genomic Landscapes of Human Breast and Colorectal Cancers. Science Nov 16 2007; 318(5853): 1108-1113. [6] Fatema J. Serajeea, Hailang Zhonga and A.H.M. Mahbubul Huq. Association of Reelin gene polymorphisms with autism. Genomics Jan 2006; 87(1): 75-83. [7] Bulayeva, Kazima B. et al. Genome-wide linkage scan of schizophrenia: A cross-

was signed into effect last May. According to GINA, which will take effect between May 2009 and May 2010, health insurance companies will not be permitted to use genetic testing information for the purposes of underwriting, employers will not be able to use information from genetic tests for hiring, firing, or granting promotions [10, 11]. However with testing kits and subsequent DNA analysis available for a few hundred dollars, it is not difficult to imagine one’s genome being analyzed unbeknownst to him or her, and having employment or insurance denied based on potentially inaccurate genetic tests. The benefits the future holds in genomic medicine are indisputable. But in these early stages of research, we must carefully weigh pros and cons. Until the complexities of disease linkage can be mitigated, perhaps continuing the practice of race-based medicine would, in some cases, be more prudent than incomprehensive genetic screening. And to that end, we must wonder if DTC testing was conceived too hastily. Unquestionably further regulation of these tests is required to prevent a misuse of science for profit; given their problematic results, selling them online to those with no background of genetic knowledge would beg for misinterpretation. Until proper legislation is produced, maybe Punnett squares and pea pods would be a better introduction to genetics than a base-by-base analysis of one’s own genome. Andrew Fister is an undergraduate at Cornell University. isolate study. Genomics Feb 2007; 87(2): 167-177. [8] [Document on the Internet]. 23andme, Inc.; 2009 [cited 2009 April 8]. Available from: www.23andme.com [9] Stuart Hogarth, Gail Javitt, and David Melzer. The Current Landscape of Directto-Consumer Genetic Testing: Legal, Ethical, and Policy Issues. Annual Review of Genomics and Human Genetics 2008; 9:161–82 [10] Genetic Information Non-Discrimination Act of 2008, May 21 2008. [11] Office for Human Research Protections (OHRP) and Department of Health and Human Services (HHS). Guidance on the Genetic Information Nondiscrimination Act: Implications for Investigators and Institutional Review Boards. March 24, 2009. [12] Cases of Genetic Discrimination [Document on the Internet]. National Human Genome Research Institute; 2008 June 13 [cited 2009 April 25]. Available from: http://www.genome.gov/12513976. [13] http://genomics.energy.gov/gallery/basic_genomics/originals/770.jpg

THE TRIPLE HELIX Fall 2009 27 12/7/2009 1:31:05 AM

CORNELL

New Stimulus, Better Health Care? Jane Yang

acing a time of economic downturn, the U.S. government took a $787 billion dollar approach that may or may not be beneficial to saving the nation. Along with stimulating the economy, the American Recovery and Reinvestment Act of 2009 also proposed health care reform. To meet this goal, the package provided an unprecedented $1.1 billion dollars to research the comparative effectiveness of different drugs, surgeries, medical devices, and other approaches to find the most clinically effective treatment for an illness [1]. Health care costs have reached staggering heights in the past years. Logically, eliminating ineffective, expensive treatments will reduce costs and offer patients proven beneficial treatments [1]. In the long run, as California Representative Pete Stark said, “The new research will eventually save money and lives” [1]. However, is there room for this expanded government role in the current health care system? With the addition of a third party, both the patient and doctor may receive unwanted, and possibly detrimental, intervention. On the other hand, if the government practices transparency in their actions and allows patients and doctors to maintain their decision-making powers, the health care system may benefit from comparative effectiveness studies.

care in the United States do not show longer life expectancies or better health statistics for higher-spending areas [3]. Such evidence suggests that patients are not necessarily receiving the most beneficial treatment for their money. In 2007, total health care spending, from government and private companies, reached $2.2 trillion, or 16% of gross domestic product. The Congressional Budget Office predicts this number will rise to 25% in 2025 if no action is taken [1,3]. These figures are an impetus for finding the best treatments, so that less effective, and possibly more expensive, drugs are not prescribed. The merits of comparative effectiveness research in the clinical setting are clearly present as well: doctors can prescribe a procedure with more certainty of its effectiveness while patients can make decisions based on comparisons of different treatment options [5,6]. Currently, out of more than 2,700 cardiologist-recommended treatments, only 11% are supported

What Comparative Effectiveness Research Entails In the U.S., drug companies and other manufacturers conduct most of the research on the efficacy of drugs. However, these companies usually do not compare similar treatments [3]. The newly legislated stimulus plan provides for the Agency for Health Care and Research and Quality to conduct comparative effectiveness studies [4]. This research includes weighing the medical benefits and risks of a range of different treatments. A study can evaluate similar treatments, such as different drugs, or compare one treatment approach against another, such as surgery against drug therapy [3]. According to the Recovery and Reinvestment Act, the cost of a drug will not be factored in the analysis [1]. The federal government plans to compare treatments in one of two ways: systematic review or head-to-head clinical trials. Systematic review is the process of combining results from several published studies to see the relative benefits and risks. Though this option is cheaper than starting new studies, research from different sources may not always be comparable. Randomized controlled trials comparing different treatments against each other are considered the most reliable. Unfortunately, it is also more expensive than systematic review, and requires a large sample size of patients [3]. A Hope for Better (and Cheaper) Health Care Comparative effectiveness research is expected to provide significant benefits for both the federal government and individual patients. Data on geographic differences in spending on health Reproduced from [10]

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CORNELL by scientific evidence [7]. In one study, the commonly used, duced its nation’s drug budget, it simultaneously rejected newer angiotensin-converting enzyme inhibitors were found coverage for beneficial treatments, such as the breast cancer to be less effective in preventing cardiovascular disease than drug Herceptin [8]. Britain’s NICE approved ranibizumab, the older, less expensive diuretics [3]. Comparative effective- a treatment for macular degeneration, over its competitor ness studies can prove that frequently prescribed treatments because ranibizumab’s manufacturers agreed to cover the cost are not as effective as previously believed, providing more if a patient needed more than 14 injections. In both cases, economic interests trump health care [9]. information to physicians. Another concern of “cookbook medicine” arises from racial In many cases, patients must choose treatments in the absence of scientific evidence that compares one alternative to minority groups and women, who are commonly overlooked in the research process [7]. If a ceranother. The Agency for Healthtain treatment were determined care Research and Quality noticed Health care costs have reached to be the most beneficial, will an increasing number of patients with narrowed kidney arteries staggering heights in the past years. that procedure be imposed on every patient with the associated choosing a surgical approach Logically, eliminating ineffective, disease? Treatments declared over a prescription treatment. Although the drugs carried a risk expensive treatments will reduce ineffective for a broad population may be potentially useful of diminished kidney function, costs and offer patients proven for certain individuals. Congress a review of the existing studies assured, though, that the research did not show the advantage of an beneficial treatments [1]. would include subjects from equally, if not more, dangerous those groups to avoid a “onesurgery over the drug regimen treatment-fits-all” outcome [1]. [6]. With proper conduction of On a smaller scale, comparative effectiveness research comparative effectiveness research, both the patient and doctor may change the doctor-patient relationship. Patients will not can make well-informed decisions. respond to the recommendations of their physician; instead, The Side Effects of Third-Party Intervention the government’s findings will influence their receipt of treatWhat was deemed “basic operations research” has fueled ment [2]. For example, the National Health Service, Britain’s a political debate on the roles of the government, insurance healthcare system, often does not cover treatments that are companies, and patients when it comes to healthcare [7]. A not recommended by NICE [9]. Therefore, regardless of the government-administered insurance program like Medicare physician’s advice, the patient will financially need to follow has the legal responsibility to cover treatments necessary for the recommendations of a third-party institute. treating an illness. Findings from comparative effectiveness With the pure intention of finding the best medical treatresearch can influence what is “necessary.” Private insurance ment, comparative effectiveness research has the potential to companies can use the findings from this research to refuse strengthen the U.S. health care system. Recommendations from patients coverage for more expensive treatments—essentially, a third party unrelated to the physician or insurance company rationing care [1]. Britain’s National Institute for Health and can help control unnecessary health care spending [1,3]; paClinical Excellency (NICE), which recommends drugs to its tients can be advocates of their own health while basing their national healthcare system, has received criticism for promot- decisions on scientific evidence. However, as demonstrated ing care rationing. NICE denied expensive cancer drugs, such in other countries, the possibilities of economic interests afas sunitinib, even though they were found to be clinically fecting research, and denial of care by insurers are likely [8.9]. beneficial [9]. Ultimately, comparative effectiveness research can be advanAlthough the U.S. will not be factor costs of treatment tageous to the U.S. health care system if the findings remain in the research, considerations for the nation’s budget can as guidelines, rather than the final decision for the patient. dangerously creep into the analysis. In New Zealand, the government agency called Pharmac considers costs in their Jane Yang is an undergraduate in the College of Arts and Sciences comparative effectiveness research. Although Pharmac re- at Cornell University. References: [1] Pear R. U.S. to compare medical treatments. The New York Times 2009 Feb 16; Sect.A:1. [2] Chen P. Does oversight threaten the doctor-patient bond? The New York Times [serial online] 2009 Feb [cited 2009 Mar 21]. Available from: URL:http://www. nytimes.com/2009/02/27/health/26chen.html [3] Congressional Budget Office. Research on the comparative effectiveness of medical treatments: issues and options for an expanded federal role [online] 2007 Dec [cited 2009 Mar 21]. Available from: URL:http://www.cbo.gov/ftpdocs/88xx/ doc8891/Frontmatter.1.2.shtml. [4] Traynor K. Officials eye comparative effectiveness research. American Journal of Health-System Pharmacy [serial online] 2009 Mar [cited 2009 Mar 21]; 66(5): 430-433. Available from: Academic Search Premier. [5] Lauer MS. Comparative effectiveness research: The view from the NHLBI. Journal from the American College of Cardiology 2009 Mar 24; 53(12):1084-1086.

[6] Agency for Health care Research and Quality. Scientific evidence lacking for patients choosing among treatments for narrowed kidney arteries. Elsevier [serial online] 2009 Mar [cited 2009 Apr 11]. Available from: URL: http://www.ahrq.gov/ news/press/pr2006/kidneypr.htm [7] Reinhardt UE. ‘Cost effectiveness analysis’ and U.S. health. New York Times [serial online] 2009 Mar 13 [cited 2009 Apr 12]. Available from: URL:http://economix. blogs.nytimes.com/2009/03/13/cost-effectiveness-analysis-and-us-health-care/ [8] Postrel V. My drug problem. The Atlantic [serial online] 2009 Mar [cited 2009 Apr 12]. Available from: URL: http://www.theatlantic.com/doc/200903/postrel-drugs. [9] Steinbrook R. Saying no isn’t NICE—the travails of Britain’s national institute for health and clinical excellence. New England Journal of Medicine 2008 Nov 6; 359(19):1977-1981. [10] http://www.whitehouse.gov/assets/images/healthcare_greenbay_blog_CK-0214. JPG

THE TRIPLE HELIX Fall 2009 29 12/7/2009 1:31:07 AM

CAMBRIDGE

Why Do We Procrastinate? Rebecka Skarstam

ccording to Timothy A. Pychyl, director of the Pro¬crastination Research group at Carleton University “Procrastination is a needless, often irrational, vol¬untary delay of an intended action (or task) even when we know that this delay will most probably compromise our performance or task completion itself.” [1]. It is not a new phenomenon, with the earliest recorded mention of procras¬tination dating back to 800 B.C. [2]. However, the problem has not always been as common as it is now. In 1978, only five percent of the population considered themselves to be chronic procrastinators compared to 26 percent in 2007. The problem seems to be especially widespread among students, with an estimated 80–95 percent of students having problems with procrastination [2]. Economist Piers Steel has researched procrastination and thinks new technology may be to blame for its spread. He has devised a formula that tells us the “utility” of a task how desirable a task is to an individual. To illustrate how the equation works, let us say that a person has a choice to either study, with the long term advantage of getting a good grade, or to succumb to the temptation of procrastination. According to Steel’s equation, people procrastinate because the temptation, though comparably low in value (V) and expectancy (E), still gives a higher utility due to the fact that the delay (D) is so small [2,3]. With the instant rewards of video games, the web and mobile phones readily available it is therefore no wonder that people are finding it harder to get on with their work and are spending more time procrastinating. In the equation above, Γ stands for personal sensitivity of delay and takes into account that humans can be more or less prone to procrastinate. But are genetic or environmental factors to blame for this? Studies done among teenagers show that the environment may be the main influence as procrastinators are more likely to have authoritarian par¬ents [4]. However, a study done on monkeys indicates that there might be a genetic contribution as well. In the study, the monkeys had to complete a task with the aid of a vi¬sual cue indicating how much of the task remained before the reward. As the reward came closer, all of the monkeys made fewer errors, and all had the same error rate on the part of the task where the reward was closest. However, the error rates on the nonrewarded sections of the task differed significantly [5]. Though we cannot tell whether the monkeys performed worse when the reward was dis¬tant due to a form of procrastination, the results indicate a biological component of sensitivity for delay (Γ) which may, according to Steel’s formula, translate into a genetic bias towards procrastination. Whether procrastination is genetically or environmen¬tally

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based, most people are only moderate procrastinators and do not suffer significantly from it. But too much procras¬tination can be costly, literally. An estimated 40 percent of all people have experienced financial loss due to procrastination [6] and procrastination endangers health both in terms of the detrimental effects of increased stress and the delayed treatment of other health conditions [7].

Reproduced from [14]

In spite of the negative effects of procrastination, many procrastinators say that the habit is an advantage to them [8]. When asked why they procrastinate a common answer was “I work better under pressure” However, this seems to be nothing more than self-deception for most people, as procrastinators generally produce inferior work to those who do not procrastinate [8]. Another misconception among procrastinators is that procrastination allows people to do the maximum amount of

CAMBRIDGE work with minimum amount of effort or pain [8]. It is true that when deadlines are distant, procrastinators have reduced stress levels and suffer less from illness than non-procrastinators. However, this advantage is counteracted towards the end of the assignment when the effects of stress are reversed. Overall, people who start on time feel better and are in better health than those who procrastinate and start later [8]. With this in mind, it is not difficult to see why nearly all procrastinators want to get rid of the habit. Ninety-five percent of all procrastinators would like to stop but find themselves unable to do so because it has become an automatic behaviour [6]. But though fighting procrastination is difficult, it is not impossible, and in researching the phenomenon scientists have found several ways of minimising the habit. A study made at Hofstra University showed that people who made “implementation intentions” —goals with speci-fication on when and where the task will be performed—were up to eight times as likely to follow through on their commitment [9]. Another group found that when asked to reply to a questionnaire, students were more likely to reply and did so more quickly when the questions were concrete rather than abstract. This is in agreement with the action-identification theory, which states that individuals are more likely to execute a difficult task by thinking of the task on a more specific level

and indicates that a person will procrastinate less if he or she is structuring the work in a more concrete way [10]. If you are already setting concrete implementation intentions, breaking the task up into smaller chunks and setting more goals might be your salvation. Dan Ariely and Klaus Wertenbroch asked their students to set their own deadlines and then awarded penalties for papers that were turned in late. Though setting the deadline for all papers at the end ofthe period would have given maximum amount of time for task completion, students who set evenly spaced deadlines generally scored better than those who did not [11]. Procrastination is due to a failure of selfcontrol and new research shows that this can be reversed by increasing the expectancy of success or by receiving affirmation in the form of positive feedback [12,13]. Finally, remember that procrastination endangers your health and finances and that the Reproduced from [15] thought of the task is often more daunting than the task itself. In fact, a study published in 2000 showed that students’ perceptions of a task often change significantly for the better when they are actually doing it [6]. In the end, Nike’s “Just Do It” might be a good place to start if you want to live a procrastination-free life. Rebecka Skarstam is a second year studying Natural Sciences at Jesus College at Cambridge University.

References: [1] No time to delay [online]. 2008 March 24 [cited 2009-02-13]; Available from: URL: http://blogs.psychologytoday.com/blog/dont-delay/200803/no-time-delay/ [2] Steel P. The Nature of Procrastination: A Meta-Analytic and Theoretical Review of Quintessential Self-Regulatory Failure. Psychological Bulletin 2007 Jan; 133(1): 65-94 [3] Borstein S. Study is a put off: Scientists research why procrastination is getting worse. USA today[Online] 2007 Dec 1 [cited 2009 Jan 29]; Available from: URL http:// www.usatoday.com/tech/science/2007-01-12-procrastination-study_x.htm [4] Wenstein A. Why kids procrastinate and how to help. education.com magazine 2009 March 9 [cited 2009 March 11]; Available from http://www.education.com/ magazine/article/Why_Kids_Procrastinate/%20/?page=2 [5] Liu Z, Richmond BJ, Murray EA, Saunders RC, Steenrod S, Stubblefield BK, Montague DM, Ginns EI. DNA targeting of rhinal cortex D2 receptor protein reversibly blocks learning of cues that predict reward. PNAS 2004 Aug 17;101(33):12336-12341. [6] Gura T. I’ll Do It Tomorrow. Scientific American Mind 2008 Dec/Jan; 27-33. [7] Sirois FM.“I’ll look after my health, later”: A replication and extension of the procrastination–health model with community-dwelling adults. Personality and Individual differences 2007 Jul; 43(1): 15-26

[8] Tice DM, Baumeister RF. PERFORMANCE, STRESS, AND HEALTH: The Costs and Benefits of Dawdling. Psychological Science 1997 Nov; 8(6): 454-458 [9] Owens SG, Bowman CG, Dill CA, Overcoming Procrastination: The Effect of Implementation Intentions. Journal of Applied Social Psychology 2008 Jan 18; 38(2): 366-384. [10] McCrea SM, Libermann N, Trope Y, Sherman SJ. Construal Level and Procrastination. Psychological Science 2008 19(12): 1308-1314. [11] Ariely D, Wertenbroch K. Procrastination, deadlines, and performance: Selfcontrol by precommitment. Psychological Science 2002 June; 13(3), 219-224. [12] Gröpel P, Steel P. A mega-trial investigation of goal setting, interest enhancement, and energy on procrastination. Personality and Individual Differences 2008 Jul 2; 45(5): 406-411 [13] Schmeichel B, Vohs K, Self-affirmation and self-control: Affirming core values counteracts ego depletion. Journal of Personality and Social Psychology 2009 Apr; 96(4): 770-782 [14] http://www.tempe.gov/LIBRARY/events/images/books.jpg [15] http://www.kingcounty.gov/employees/HealthMatters/PersonalHealth/~/media/ employees/HealthMatters/StressLess/images/stress.ashx

THE TRIPLE HELIX Fall 2009 31 12/7/2009 1:31:09 AM

BROWN

The Feminization of the HIV/AIDS Epidemic in Bangkok, Thailand: Examining the Breadth of Women’s Burden Sarah Schoenbrun

hailand’s 100 percent condom campaign has been heralded as a major success in achieving a lasting reduction in HIV infection rates across the country (1). The government’s prevention program began in 1991, targeting schools, the media, the workplace, and brothels, which were believed to be at the

Pregnant women’s rates of infection jumped significantly from 0.2 percent in 1990 to 1.2 percent in 2005.

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Female Commercial Sex Workers: Responsible for Protecting the Health of Male Clients In the late 1980s, when Thailand’s HIV outbreak began, the commercial sex industry was identified at the core of the epidemic. The 100 percent condom campaign specifically targeted female commercial sex workers, many of whom worked in bars that were known to double as brothels, despite the fact

Photo by Sarah Schoenbrun.

epicenter of the epidemic. Overall HIV prevalence peaked in 1995 at over two percent but has since decreased to roughly 1.4 percent—around 610,000 people. In the midst of the widespread success of the Thai government’s 100 percent condom campaign, an alarming trend has emerged. HIV prevalence has increased among pregnant women, who are the only demographic to experience a rise in infection since the campaign began. Pregnant women’s rates of infection jumped significantly from 0.2 percent in 1990 to 1.2 percent in 2005 (2). Unfortunately, the increased prevalence of HIV among pregnant women in Thailand is consistent with a worldwide trend. Globally, young women are 1.6 times more likely to have HIV/AIDS than young men (3). In South Asia, the risk factors associated with HIV/AIDS include poverty, early marriage, trafficking, sex work, migration, gender discrimination, and violence (2). In addition to these factors, studies show that women are at risk for HIV because of the sexual behavior of their partners (4). One study in particular noted that HIV prevalence in pregnant women increased consistently in Bangkok from 1991 to 1996, and the only identifiable risk factor for 52 percent of women was sex with their current partners (3). In other words, it seems that husbands are infecting their wives after contracting HIV themselves from premarital or extramarital relationships. The burden of HIV infection for pregnant and married women presents a major challenge as far as interventions are concerned. Experts fear that the 100 percent condom campaign, which so successfully reduced HIV prevalence in the general population and among sex workers in the 1990s, will not be as effective in preventing infection among married couples, who are less likely to use condoms during sex (6). For those working to stop the HIV epidemic in Thailand, the question has become, how can married and pregnant women—those whose

infection rates are currently on the rise—be the target of an HIV prevention campaign? After all, the only “risky behavior” that these women exhibit is unprotected marital sex—an all-around conventional, ostensibly safe act. It would seem that the most logical way to prevent pregnant women from contracting HIV would be to focus on the behavior of their male partners—namely, to discourage men from engaging in extramarital affairs, thereby lessening the risk of HIV transmission from mistress to husband to wife. However, the Thai government has traditionally avoided any public health campaigns that target male behavior and has instead redirected these efforts to exert pressure on women in increasingly innovative and insidious ways.

Patpong, Bangkok's historical red light district, known to be especially popular among tourists

that prostitution is technically illegal in Thailand. The HIV prevalence among these “bar girls” peaked in some areas, such as Chiang Mai, at a shockingly high twenty-five percent. As a result, government officials distributed a supply of free condoms to the bar owners, insisting that all “bar girls” use them during sex acts performed with male clients. In order to © 2009, The Triple Helix, Inc. All rights reserved. 12/7/2009 1:31:09 AM

Photo by Sarah Schoenbrun.

BROWN enforce this procedure, undercover government officials went to brothels posing as clients. According to a Joint Report by various UN agencies, the World Health Organization (WHO), and the World Bank, the focus on brothels as centers of HIV transmission “has been highly successful. Reported condom use in brothels increased from only 14 percent of sex acts in 1989 to over 90 percent by 1994” (1). The Thai government’s focus on brothels as hotspots of HIV infection effectively decreased HIV prevalence, but the fairness of its methods is questionable, considering that female commercial sex workers were charged with the sole responsibility of enforcing condom use. Consequently, these women faced enormous pressure, especially in the early stages of the intervention, when male clients were much more resistant to condom use than they are today (Janyam S, Director of SWING [Service Workers IN Group], interview, 2008 July). Female commercial sex workers face the constant threat of job termination, and because prostitution itself is illegal, they lack any legal Woman selling fruit on the street protection. As a result, many have to bribe doctors for negative HIV test results to present to their employers in order to keep their jobs. In essence, the 100 percent condom campaign demands that these women enforce safe sex, but it exempts their male clients from pressure to do the same. Pregnant Women: Responsible for HIV Testing and Partner Notification In Thailand, pregnant women are administered HIV tests as part of routine prenatal care. The issue of “informed consent” with respect to HIV tests is a pressing one because pregnant women are often tested for HIV without fully understanding the implications of a positive result. The Ministry of Public Health claims that these tests are “voluntary,” but studies show that seventy-nine percent of women who were tested said they were unprepared for the test, thirty-five percent said the test was “mandatory,” only thirty percent received pre-test counseling, and twenty percent said they were coerced into being tested. Most pregnant women do not test positive for HIV, but those who do must then bear the burden of informing their husbands, who are likely to be HIV-infected as well. From a public health perspective, involuntary testing of pregnant women seems like an effective way to ensure awareness of HIV status and to prevent vertical transmission from mother References: [1] Thailand achieves sustained reduction in HIV infection rates [Online]. 2000 [cited 2009 Apr 17]; Available from: URL:http://www.who.int/inf-new/aids1.htm [2] Epidemiological fact sheet on HIV and AIDS: Thailand [Online]. 2008 Sep [cited 2009 Apr 17]; Available from: URL:http://www.who.int/globalatlas/ predefinedReports/EFS2008/full/EFS2008_TH.pdf [3] Women and HIV/AIDS: confronting the crisis [Online]. 2004 [cited 2009 Apr 17]; Available from: URL:http://www.unfpa.org/hiv/women/docs/women_aids.pdf [4] Siriwasin W, Shaffer N, Roongpisuthipong A, Bhiraleus P, Chinayon P, Wasi C

to child. However, many consider the involuntary testing to be a violation of human rights. Additionally, this type of testing and coerced partner notification may lead to both physical and emotional domestic violence (Phanuphak P, Director, Thai Red Cross AIDS Research Center, interview, 2008 June). Like female commercial sex workers, pregnant women carry an inequitably heavy burden in the fight against HIV. When hospitals administer involuntary HIV tests to pregnant women, they strip pregnant women of their right to confidentiality, while sparing men from shared responsibility in HIV prevention. Conclusion: Looking to the Future of HIV/AIDS in Thailand The effects of globalization in modern-day Thailand are promising in terms of the HIV/AIDS epidemic. Young Thai men are increasingly monogamous and are less likely to visit commercial sex workers than their fathers and grandfathers were. Therefore, their sexual networks are less exposed to the risk of HIV transmission (6). Also, young women in Thailand are more likely to attend school than they were twenty years ago. They enjoy the educational opportunity that permits increased financial and social autonomy and affords them more power to avoid the poverty and dependence that can lead to high-risk sexual behavior and increased risk of HIV infection. In order to address the disturbing reality of increasing infection rates among pregnant women and to alleviate the excessive burden that women bear with respect to HIV, the Thai government can support equitable policies consistent with these globalization trends. By instituting voluntary HIV testing and counseling for both partners during pregnancy, supporting domestic caregivers, requiring universal education for young people, and criminalizing violence against women, the Thai government can promote shared responsibility between men and women for HIV prevention. Also, by legalizing commercial sex work, the Thai government can ensure that female commercial sex workers have access to health care and other legal protections that allow them to work more safely. When women and men share the burden of HIV, including prevention, testing, partner notification, care, and support, not only will women’s infection rates decrease, but the HIV/AIDS epidemic will begin to lose its overall momentum. Sarah Shoenbrun is an undergraduate at Brown. et al. HIV prevalence, risk, and partner serodiscordance among pregnant women in Bangkok. JAMA 1998 Jul;280(1):49-54. [5] Nelson KE, Celentano DD, Eiumtrakol S, Hoover DR, Beyrer C, Suprasert S et al. Changes in sexual behavior and a decline in HIV infection among young men in Thailand. N Engl J Med 1996 Aug;335(5):297-303. [6] National sexual behavior survey of Thailand 2006 [Online]. 2007 [cited 2009 Apr 17]; Available from: URL:http://www.ipsr.mahidol.ac.th/IPSR/BookDetail/Download/ National%20Sexual%20Behavior%20Survey%20of%20Thailand%202006.pdf [7] Images by Sarah Schoenbrun, taken July 2008, Bangkok, Thailand

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CAMBRIDGE

The Media: Scientists Can’t Live With Them and They Can’t Live Without Them Laura Corrigan

he media continues to misreport, misunderstand, misquote and exaggerate science, creating quite a stir in the scientific community. Why do they do this? Perhaps out of ignorance, lack of specialisation or, dishearteningly, just to sell a few papers. It is somewhat ironic that one of the few channels available for the popularisation of scientific knowledge is also responsible for the demise of its reputation. The misreporting of research has the ability to induce unnecessary but profound panic, leading to long lasting and wide spread concern. Such actions, including the use of wacky headlines and general hyperbole can discredit both the scientists and journalists concerned. The demoralizing effects on the researchers themselves can include not only the unnecessary personal humiliation but also the possibility that they lose their funding, or even lose their willingness to communicate findings to the public altogether. This issue is ongoing. Recently, Professor Simon Baron-Cohen, Director of the Autism Research Centre in Cambridge [4], became one of the latest victims in the battle for accurate depiction of research. On January 12th this year he published a paper in the British Journal of Psychology following a study that showed a positive correlation between foetal levels of testosterone and certain behavioural ‘autistic traits’ [3]. His paper found its way onto the front page of The Guardian under the headline “new research brings autism screening closer to reality”, with the strapline reading “call for ethics debate as tests in the womb could allow termination of pregnancies”. Baron-Cohen retorted to this with an article published in the New Scientist in which he attempted to clarify a fact that The Guardian seemed to have completely missed – that nowhere in his paper was it suggested that high levels of testosterone in the womb are linked to autism itself, especially since none of the 235 children studied had autism. It instead 34 THE TRIPLE HELIX Fall 2009 UChicagobookfinished.indb 34

found a relationship between high foetal testosterone and autistic traits, such as communication skills [2]. Baron-Cohen argued that “the headline writers went beyond the data to create a simple, bite-size but inaccurate message” as well as fused “two issues that should have been kept separate: the study itself, on prenatal hormonal effects in children developing typically, and the issue of autism screening” [2]. A sloppy headline, if not forgivable, can at least be a simple misunderstanding, after all science can be very hard to grasp for anyone unfamiliar with the subject. The science that is communicated to the public is forever being ‘dumbed down’ by journalists in the hope of expanding the potential audience [1]. “While stories on GM food or cloning stood a good chance of being written by specialist science reporters” writes The Guardian columnist Ben Goldacre in his book ‘Bad Science’, “80% of the coverage [of the MMR/autism hoax] was by generalist reporters”[1]. Moreover, science journalism often involves Reproduced from [11] the employment of a second or even third party, creating multiple opportunities for misunderstanding and general errors to occur. Most worryingly, experimental evidence is rarely presented in the article itself [1], never allowing the reader to form their own opinions and forcing them to rely on conclusions drawn by some under-qualified reporter or editor. Under pressure to bring in readers with break-through stories, journalists have been known to bend the truth or pick and choose their sources, ignoring counter-evidence to favour their argument. As highlighted by Goldacre, science is rarely groundbreaking – it is often slow moving, with the accumulation of small incremental discoveries contributing to present day knowledge. Thus, journalists may feel obliged to exaggerate or deliberately misinform the reader with the hope of deceiving them into believing the research in question is a break© 2009, The Triple Helix, Inc. All rights reserved. 12/7/2009 1:31:10 AM

CAMBRIDGE through [1]. Health stories are particularly vulnerable to this sort of manipulation as they equate to good business in the media; after all, the new finding may affect every reader. Whether intentional or accidental, the misunderstanding or misrepresentation of statistics is often a significant part of this. Few health scares have had the coverage comparable with the MMR/autism hoax, which started in the nineties and steamrolled its way through the papers for nine years [1] thanks to such ‘bad stats’. Reports of a link between the MMR vaccine and autism resulted in the rate of vaccinations falling from 92% to 80% [9] after which the number of cases of measles in the UK soared, despite numerous follow-up studies failing to support these claims [10]. Most scientists think of communicating results as integral to the process of research, nevertheless there has recently been cause for concern as we witness the beginnings of a decline in science journalism within the realm of the mass media. The results of a recent Nature survey of 493 scientists revealed an alarming loss of jobs in science journalism, whilst reporting that 59% of the journalists remaining were suffering from a subsequent increase in workload [6]. This is possibly due an overall trend towards cutbacks in newspaper staff or to a shift in science communication towards the use of online blogging and other forms of internet media [5], instead of the more traditional channels. Science blogs allow scientists and institutions more influence over published material and hence what the public reads. Whilst this seems to solve the problems created by second party communication, science blogging has its own downfalls as it reduces the size of the audience exposed to new discoveries. Despite the most successful websites attracting hundreds of thousands of readers each month [6], information is only available to those who seek it and important discoveries may be ignored simply because the public are unaware that they

have happened. In light of the ever-diminishing relationship between scientists and the media, the decline of science journalism seems understandable, if not inevitable. One is left wondering whether the decline is the cause or effect of this deteriorating relationship. Whatever the case, solutions are available which predominantly involve the introduction of systems in which science articles are subject to tighter controls. After all, the 1999 “Frankenstein Food” debacle stemmed from the release of unpublished, and hence not yet reviewed, material by Arpad Pusztai [8]. Numerous stories appeared in the Daily Mail and the Express superfluously condemning all GM foods [7] following Pusztai’s claims that mice develop stunted growth and impaired Reproduced from [12] immune responses from eating genetically altered potatoes [8]. Baron-Cohen feels passionately about the inconsistency concerned, “if scientists are regulated by ethics committees, perhaps science journalists should also have some kind of regulation”. Whilst the time restraints that journalists are subject to would make the practicalities of such a system difficult, he believes that “at the very least science journalists could offer free peer review to each other prior to printing.” Baron-Cohen fears that “misinformation may influence public opinion about research” and that “this could in theory affect parents’ willingness to join in research studies and even funders’ willingness to fund research”. Emphasising that science journalism “is essential if we are to avoid a two-tier society between scientists who have the knowledge and the public who do not”, and despite the many disheartening examples of misreported science, he still believes that the “pros [of science journalism] outweigh the cons”, nevertheless he is calling for “tighter regulations” as a new way forward.

References:

[7] Select committee on Science and the Technology, Third Report. Available from: http://www.publications.parliament.uk/pa/ld199900/ldselect/ldsctech/38/3810.htm [Cited August 16 2009] [8] Health Watch: The GM Furore: Who’s the Blame? Available from: http://www. healthwatch-uk.org/awardwinners/bernarddixon.html [Cited August 16 2009] [9] Brian Deer, MMR doctor Andrew Wakefield fixed data on Autism, Times Online 2009 February 12. Available from: http://www.timesonline.co.uk/tol/life_and_style/ health/article5683671.ece [10] NHS immunisation information: MMR the facts. Available from: http://www. mmrthefacts.nhs.uk/library/cause.php [Cited August 16 2009] [11] http://www.sandia.gov/news-center/news-releases/2005/images/domenici.jpg [12] http://photos.state.gov/libraries/amgov/30145/ejs/responsible_media_600.jpg

[1] Ben Goldacre. Bad Science. Fourth Estate; 2009 [2] Simon Baron-Cohen. Media Distortion Damages both Science and Journalism. New Scientists Mar 27 2009; 2701 [3] Bonnie Auyeung, Simon Baron-Cohen, Emma Ashwin, Rebecca Knickmeyer, Kevin Taylor and Gerald Hackett. Fetal Testosterone and Autistic Traits. British Journal of Psychology 2009;100:1-22 [4] Autism Research Centre [Online] Available from: http://www. autismresearchcentre.com/arc/staff_member.asp?id=33 [Cited August 16 2009] [5] Editorial. Filling the void. Nature Mar 19 2009;458:260 [6] Geoff Brumfield. Science journalism: Supplanting the old media? Nature 2009 Mar 19;458:274-277

Laura Corrigan is currently a undergradute at Cambridge.

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BROWN

Prions: From Dogma, to Mystery, to Benefit? David Koren

ow do we get sick? Touching an infected door handle, was virtually ruled out [1]. But, hindered by their complete walking through tick-infested areas, and kissing a faith in the Central Dogma, scientists had difficulty considering sick person can spread viruses and bacteria, which the notion of a protein-only pathway. The mathematician J. S. use their own DNA or RNA to multiply within the body Griffith proposed three potential mechanisms for scrapie in and cause infectious diseases. However, recent research has a 1967 paper, adding that “there is no reason to fear that the revealed a completely different type of disease transmission existence of a protein agent would cause the whole theoretimechanism. Certain diseases, cal structure of molecular bioltermed transmissible spongiform ogy to come tumbling down” encephalopathies (TSEs), spread [4]. Still, it was not until 1982 [M]uch research on TSEs has via a tiny molecular agent that that Griffith’s ideas were seridisproven Crick’s conjecture: rapidly causes brain tissue wastously considered; in the interim, ing and death. This agent is the proposed mechanisms of replicainfectious proteins, too, can be prion, a protein without nucleic tion—viroids, DNA complexes, self-replicating. acids that replicates by confermembranes—were all associated ring structural changes onto host with nucleic acids in one way or tissue [1,2]. Moreover, its unique another, consistent with Crick’s replication process may provide shocking clues about the Dogma [1]. nature of the brain and the function of human memory. In 1982, Stanley Prusiner published the first of many papers that would revolutionize the field and later earn him An Infallible Dogma a Nobel Prize [2]. Affirming that scrapie was not caused by In the 1960s, in the wake of the DNA revolution led by Francis a known agent, he named the structure “prion,” denoting Crick—a co-discoverer of DNA’s molecular structure—many “proteinacous infectious particle.” Nevertheless, Prusiner was scientists claimed that the entire phenotype of a living be- not immediately certain whether or not the prion contained a ing could be traced to the double helix. Information, they nucleic acid; considering a self-replicating protein, he believed, believed, was transcribed from DNA to RNA and translated was “heretical” [1]. Fortunately, for Prusiner, “heretical” did into proteins, the molecules responsible for the characteris- not mean “impossible.” Two years later, he published theotics of living things. Additionally, most scientists believed ries of two potential methods of prion replication. The first that the active form of a protein was of his propositions was that the prion wholly and exclusively dependent on protein, PrP, stimulated DNA transcripits primary structure, that is, the precise tion, causing further PrP production. chain of amino acids formed in transPrusiner’s second idea stipulated that lation. As Crick stated regarding the the conformation of infectious PrP irreversibility of translation, “Nature served as a template for the formacould not proceed in another way” [1]. tion of new PrP molecules—without This became the “Central Dogma” of any involvement of nucleic acids [5]. biology. Since then, however, much Incidentally, these hypotheses mirrored research on TSEs has disproven Crick’s two of the mechanisms that Griffith conjecture: infectious proteins, too, can proposed seventeen years earlier [4]. be self-replicating [1,2]. Much evidence from PrP studies from the 1980s favored the latter of From Scrapie to Heresy Prusiner’s hypotheses. Indeed, PrPBy the early 20th century, scrapie, a coding mRNA was found to exist in neurodegenerative disease in sheep infected mice in equal quantities as in marked by the infected animals’ devuninfected mice, revealing that PrP was astating habit of wool scraping, threata naturally-found protein in mammals ened to ruin European farmers. This [5]. Furthermore, animals that lacked Atomic force micrograph of PrPSc rods. prompted scientific inquiry into the Reproduced from [24]. the normal PrP protein (PrPC) were epidemic. Initial hypotheses implicated unaffected by the “infectious” form of a diverse range of molecules, from polysaccharides and lipids the protein, PrPSc [6,7]. Examining the two forms of the proto virus-like agents. However, as the incubation time of TSEs tein revealed no differences in primary structure, suggesting is frequently measured in years [3], a viral mode of infection that the only difference was conformational [8]. Together, this

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BROWN evidence formed the basis of the modern hypothesis of the prion. PrPSc, an insoluble and protease-resistant conformation of the prion protein, replicates by converting naturally occurring PrPC molecules [7]. As such, prions present a major challenge to the Central Dogma as it was understood by Crick and his colleagues [2]. The Controversy: Mad Cow Disease and Alzheimer’s The structure of the prion protein has been conserved throughout evolution, allowing TSEs to occasionally cross between different species [7]. Such was the case when bovine spongiform encephalopathy (BSE) sickened upwards of 150 people in Britain who had consumed prion-infected beef [9]. Cases of the human analogue of BSE, called Creutzfeldt-Jakob disease (CJD), are still reported on a sporadic basis. Due to its long incubation time and the possibility of transmission via blood transfusion, future epidemics of CJD still threaten Western Europe and North America [10]. Still, fewer than two percent of all CJD cases are acquired. The vast majority, eighty-five to ninety percent, of CJD cases are spontaneous (sCJD). These are often accompanied by a homozygous valine or methionine codon on chromosome 20 [11]. Symptoms of TSEs vary depending on the specific PrP strain of the organism [7]. Likewise, each subtype of PrPSc

carries slight differences in symptoms or timeframe of disease, although most result in rapidly progressing dementia and death within months of onset. One extremely rare form of CJD, called VV1 (valine-valine), is distinguished by the gradual onset of dementia and atypical brain scan presentations [11]. Additionally, vCJD (variant CJD, the type associated with BSE transmission) has been shown to uniquely induce abnormal excitation in the hippocampus [12]. These examples illustrate that even within a single animal species, variations in prion structure can account for clinically dissimilar cases. Prions have also been linked to Alzheimer’s disease. In both Alzheimer’s and CJD, insoluble amyloid aggregates gradually destroy brain tissue. Although some correlation between the development of Alzheimer’s and CJD may be attributed to age [13], studies have shown a link between the prion polymorphism (homozygosity for methionine) and Alzheimer’s [14]. Experiments have shown that levels of PrPC tend to be inversely correlated with those of amyloid peptides, and that PrP-null mice exhibit deficits in spatial learning and a generally decreased resistance to stress [15]. PrPSc infection in mice also dramatically increases amyloid formation [16]. Consequently, Baier et al. hypothesize that CJD causes an increase in amyloid plaques due to a loss of function of the prion protein, suggesting that the cellular prion protein may

Image reproduced from [25].

THE TRIPLE HELIX Fall 2009 37 12/7/2009 1:31:22 AM

BROWN reduce amyloid buildup and combat Alzheimer’s [6]. However, moderate activity of the NMDA receptor, which allows Ca2+ a more recent study surprisingly indicated just the opposite, entry into neurons and is thought to play a role in memory showing that PrPC binds to an amyloid intermediate and thus [15,22]. Evidence that memory mechanisms make use of prions obstructs synapse strengthening came with structural studies of and memory formation. In mice CPEB, a protein that influences lacking PrPC, as well as those long-term memory by inducgiven an anti-PrPC antibody, ing mRNA transcription and these interactions do not ocsynaptic strengthening. One cur [17,18]. Such contradictory of the conformations of this findings about the role of the protein is structurally similar prion protein form the crux of to PrP, in addition to exhibiting the current debate. According an environment-dependent form to a leading researcher, “The of replication identical to that in fact that prions are sometimes prions (as opposed to Mendelian beneficial and sometimes detriheritability) [6]. Because of this mental…is at the heart of their evidence, some have suggested biology – … they present a sort that prion conformational flips of bet-hedging strategy, where may be the “switch” governing The sponge-like lesions characteristic of CJD. Reproduced from [26]. memory formation [23], a very in some circumstances it’s good to be in the prion state and in some cases it’s not” [19]. Thus, intriguing conjecture. although the link between PrPC and Alzheimer’s is uncertain, prions present a significant potential for understanding, Conclusion and eventually treating, Alzheimer’s and other neurological In biology, a practical way to study the function of a structure—a disorders [18]. gene, an ion channel, an organ—is to deactivate it. In this case, it appears that nature’s random mutations provided scientists Beyond Disease: The Emerging Role of PrP in Memory with just this type of experiment. Not three decades have passed Following evidence that prions can be beneficial in the struggle since Prusiner named this mysterious infectious particle, yet against Alzheimer’s, some research has shifted away from in this short time span, the prion has acquired the potential to examining TSEs and towards understanding the normal revolutionize molecular biology. In 1982, prions were considered function of PrPC. Curiously, PrP in the mammalian brain is just infectious particles in isolated populations; today, they are concentrated at synapses and plays a role in the homeostasis not only key molecules in mental illnesses but also candidates of copper [20]. Since anomalous copper concentrations have for significant and surprising roles in the function of the human been associated with Alzheimer’s and Parkinson’s, and appear brain and the mechanisms of memory. to block synaptic strengthening in the rat hippocampus [21], a memory-related function is clearly suggested. PrPC appears to David Koren is an undergraduate at Brown University. References: [1] Schneider K, Fangeran H, Michaelsen B, Raab WHM. The early history of the transmissible spongiform encephalopathies exemplified by scrapie. Brain Res Bull 2008;77(6):343-55. [2] Bussard AE. A scientific revolution? EMBO Rep 2005 Aug;6(8):691-4. [3] Carlson GA, Ebeling C, Torchia M, Westaway D, Prusiner SB. Delimiting the location of the scrapie prion incubation time gene on chromosome 2 of the mouse. Genetics 1993;133(4):979-88. [4] Griffith JS. Self replication and scrapie. Nature 1967;215:1043-4. [5] Keyes ME. The prion challenge to the ‘central dogma’ of molecular biology, 1965-1991: part II: the problem with prions. Stud Hist Philos Biol Biomed Sci 1999;30(2):181-218. [6] Shorter J, Lindquist S. Prions as adaptive conduits of memory and inheritance. Nat Rev Genet 2005;6:435-50. [7] Collinge J, Clarke AR. A general model of prion strains and their pathogenicity. Science 2007;318:930-6. [8] Basler K, Oesch B, Scott M, Westaway D, Walchli M, Groth DF et al. Cell 1986 Aug 1;46(3):417-28. [9] Ghani AC, Donnelly CA, Ferguson NM, Anderson RM. C R Biol 2002 Jan;325(1):37-47. [10] World Health Organization [Online]. 2002 [cited 2009 April 16]; Available from: URL:www.who.int/mediacentre/factsheet/fs180/en [11] Tanev KS, Yilma M. An unusually presenting case of sCJD-the VV1 subtype. Clin Neurol Neurosurg 2009 Apr 3;11(3):282-91. [12] Ratte S, Prescott SA. Hippocampal bursts caused by changes in NMDA receptordependent excitation in a mouse model of variant CJD. Neurobiol Dis 2008 Dec;32(1):96-104. [13] Heinfellner JA, Wunschitz J, Jettinger K, Liberski PP, Gullotta F, Budka H. Coexistence of Alzheimer-type neuropathology in CJD. Acta Neuropathologica 1998;96(2):116-22. [14] Riemenschneider M, Klopp N, Xiang W, Wagenpfeil S, Vollmert C, Muller U et al. Prion protein codon 129 polymorphism and risk of Alzheimer disease. Neurology 2004;63:364-6. [15] Khosravani H, Zhang Y, Tsutsui S, Hameed S, Altier C, Hamid J et al. Prion protein

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attenuates excitotoxicity by inhibiting NMDA receptors. J Cell Biol 2008;181(3):551-65. [16] Baier M, Apelt J, Riemer, C, Gultner S, Schwarz A, Bamme T et al. Prion infection of mice transgenic for human APPSwe: increased accumulation of cortical formic acid extractable Abeta(1-42) and rapid scrapie disease development. J Dev Neurosci 2008 Nov;26(7):821-4. [17] Laurén J, Gimbel DA, Nygaard HB, Gilbert JW, Strittmatter SM. Cellular prion protein mediates impairment of synaptic plasticity by amyloid-beta oligomers. Nature 2009;457:1128-32. [18] Ledford H. Nature News [Online]. 2009 Feb 25 [cited 2009 Apr 17]; Available from: URL:http://www.freerepublic.com/focus/f-news/2196007/posts [19] Large number of new prions discovered: scientists redefining what it means to be a prion [Online]. 2009 Apr 7 [cited 2009 May 16]; Available from: URL:http://www. sciencedaily.com/releases/2009/04/090402124320.htm [20] Herms J, Tings T, Gall S, Madlung A, Giese A, Siebert H et al. Evidence of the presynaptic location and function of the prion protein. J Neurosci 1999;19(20):8866-75. [21] Leiva J, Palestini M, Infante C, Goldschmidt A, Motles E. Copper suppresses hippocampus LTP in the rat, but does not alter learning or memory in the morris water maze. Brain Res 2009;1256:69-75. [22] Sureda FX. Excitotoxicity and the NMDA receptor [Online]. 2000 Apr [cited 2009 May 15]; Available from: URL:www.eurosiva.org/Archive/Vienna/abstracts/Speakers/ SUREDA.htm [23] Is a prion the memory switch [Online]? 2004 Jan 6 [cited 2009 May 15]; Available from: URL:http://stke.sciencemag.org/cgi/content/abstract/sigtrans%3B2004/214/tw1 [24] Centers for Disease Control and Prevention [Online]. 2007 Jan 4 [cited 2009 Apr 17]; Available from: http://www.cdc.gov/ncidod/dvrd/cjd/classic_cjd_tissue_slide_large_view.htm 25 http://upload.wikimedia.org/wikipedia/en/c/c2/Prion_propagation.svg [26] Coughey B. National Institute of Allergy and Infectious Disease [Online]. 2009 Apr 7 [cited 2009 Apr 17]; Available from: http://www3.niaid.nih.gov/labs/aboutlabs/lpvd/ TSEPrionBiochemistrySection

CMU

Yoga: A Potential Cure for Cancer Akanksha V. Vaidya

few years ago, a small Indian man, backed up by nothing more than a few case reports and extreme confidence in an age-old tradition, proclaimed in front of a crowd of more than a thousand people that people could literally “breathe” cancer away. Swami Ramdev, an Indian yoga guru, has been caught in waves of controversy ever since he made this bold statement. As reported in Indian Express, Swami Ramdev claimed that cancers of the breast, liver, prostate gland, pituitary gland and even brain could be cured by seven simple breathing exercises. Ramdev claimed that his statement was based on data collected from patients who had benefitted from the breathing exercises [1]. According to the American Cancer Society, this disease is responsible for one out of every four deaths in the U.S. [2]. Considering this fact, and the fact that years of research could not find a satisfactory cure for many types of cancer, Ramdev’s proclamation was bound to raise quite a few eyebrows. After all, how could something like yoga achieve what years of research could not achieve? Researchers at the Patanjali Yogpeeth, the yoga institute

founded by Swami Ramdev, are attempting to explain the results observed in cancer patients practicing yoga. Dr. Shirley Telles, a research consultant at the Patanjali Yogpeeth, believes

[S]imple yoga ... and breathing exercises are excellent stress relievers. Yoga has therefore been used to alleviate pain and stress in cancer patients. that research in this field is just gaining momentum. “There is a lot of research [going on] – simultaneously examining the efficacy of yoga as a complementary therapy for cancer as well as in understanding the mechanisms underlying any benefits observed,” Telles says. This article will attempt to string together such studies linking yoga and cancer. Yoga as a Stress Reliever Before delving into the more mysterious aspects of yoga, it is important to understand the most basic effects of yoga. The simple yoga exercises and breathing exercises are excellent stress relievers. Yoga has therefore been used to alleviate pain and stress in cancer patients. Yoga has been used as a pain reliever in certain forms of terminal cancer, such as metastatic breast cancer [3]. Patients have reported feeling relaxed and revitalized after yoga sessions. Yoga has also been known to reduce fatigue and nausea, which are the after-effects of chemotherapy. Culos-Reed noted that both psychological symptoms like irritability, moodswings, and depression, as well as physiological symptoms like diarrhea and nausea in cancer survivors can be countered by practicing yoga [4]. Yoga also helps patients by helping them develop a positive mental state. According to Telles, “Yoga practice induces a positive mental state and reduces feelings of anger, fear and sadness.” Yoga Affects Antioxidant Levels Yoga’s calming effect has been known for centuries, but what has caught the interest of researchers recently is that yoga is also capable of altering internal biological processes. An intriguing find presented in a paper by researchers from the All India Institute of Medical Sciences suggests that yoga can actually alter gene expression [5]. The group studied patients practicing Sudarshan Kriya for at least a year. Sudarshan Kriya (SK) is a special breathing technique that involves rhythmic breathing in three different paces.

Reproduced from [9].

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CMU White blood cells from patients practicing SK for a year were compared to those of control patients who did not perform any exercise. The cellular components of the cells, as well as the genetic code from the white blood cells were assayed and it was discovered that patients practicing SK had better antioxidant levels. The antioxidants found in the cells as well as the RNA transcripts made from the cellular DNA were more efficient in subjects practicing SK than in subjects not practicing it [5]. Although this particular study did not study the link between antioxidants and cancer prevention, some other studies have shown that antioxidants are helpful in preventing cancer. Antioxidants help in using up free radicals within the cell. Free radicals, which are chemical species with unpaired electrons and hence extremely reactive, may harm the cell in a variety of ways, which might lead to cancer. Another study has shown that antioxidants like NADPH oxidase can be beneficial in preventing cancer [6]. These two studies together provide a compelling link between yoga and cancer. Yoga Strengthens the Immune System However, antioxidants are not the only factors affected by yoga. Recent research has shown that yoga has the potential of affecting the immune system as well. A group led by Vinod Kochupillai studied the effects of yoga on the immune system of the body. The group targeted its research on the natural killer (NK) cells of the immune system [7]. The NK cell is a type of lymphocyte, whose main function is to destroy virus-infected cells. However, NK cells are also able to identify cells that may potentially develop into cancerous cells, and destroy them. Kochupillai studied cancer patients who had finished their standard therapy against cancer. The effects of pranayam (breathing exercises) and SK were studied in these patients. The results showed that after twenty-four weeks, the NK cell count in patients practicing pranayam and SK was significantly higher than the count in controls [6]. Such a direct link between yoga and the immune system had not been observed earlier. Therefore, such studies which linked yoga with the immune system provided a breakthrough in this field. According to Telles, effects on the immune system are noticeable in patients in the early stages of cancer. References: [1] Yoga can cure cancer: Ramdev [Online]. 2007 Jan 2 [cited 2009 Apr 15]; Available from: URL:http://www.expressindia.com/news/fullstory.php?newsid=79004 [2] Cancer Facts & Figures 2008 [Online]. 2008 [cited 2009 Apr 15]; Available from: URL:http://www.cancer.org/downloads/STT/2008CAFFfinalsecured.pdf [3] Carson JW, Carson KM, Porter LS, Keefe FJ, Shaw H, Miller JM. Yoga for women with metastatic breast cancer: results from a pilot study. J Pain Symptom Manage 2007 Mar;33(3):331-41. [4] Culos-Reed SN, Carlson LE, Daroux LM, Hately-Aldous S. A pilot study of yoga for breast cancer survivors: physical and psychological benefits. Psychooncology 2006 Oct;15(10):891-7. [5] Sharma H, Datta P, Singh A, Sen S, Bharadwaj N, Kochupillai V et al. Gene expression profiling in practitioners of Sudarshan Kriya. J Psychosom Res 2008

40 THE TRIPLE HELIX Fall 2009 UChicagobookfinished.indb 40

Reproduced from [10]

Telles and her group conducted a similar study in breast cancer patients [8]. In this study, breast cancer patients were given yoga lessons while undergoing conventional therapy consisting of surgery, radiation and chemotherapy. A control group was given psychological support and counseling. The control group tested whether the effects of yoga were only because of a positive mindset, or whether they were because of definitive physiological changes. NK cell count in patients was compared before surgery and after surgery, and before surgery to after chemotherapy was administered. It was observed that in patients of the control group, NK cell count significantly decreased post-surgery and postchemotherapy. However, in patients practicing yoga, this count remained fairly constant. The results linking NK cells, antioxidants and yoga are very promising, but more research needs to be conducted in this field to come up with conclusive results. As Telles notes, at this point all we can say is that yoga could be an important supportive therapy, useful alongside conventional treatment like chemotherapy. She also states that the modern medical community is ready to accept the fact that yoga could be beneficial for cancer patients, even though there are some who are rightly skeptical. As Telles explained, perhaps what is important at this point is to keep an open mind towards this form of treatment. Akanksha V. Vaidya is an undergraduate at Carnegie Mellon. Feb;64(2):213-8. [6] Ushio-Fukai M, Nakamura Y. Reactive oxygen species and angiogenesis: NADPH oxidase as target for cancer therapy. Cancer Lett 2008 Jul 18;266(1):37-52. [7] Kochupillai V, Kumar P, Singh D, Aggarwal D, Bhardwaj N, Bhutani M et al. Effect of rhythmic breathing (Sudarshan Kriya and Pranayam) on immune functions and tobacco addiction. Ann N Y Acad Sci 2005 Nov;1056:242-52. [8] Rao R, Telles S, Nagendra H, Nagarathna R, Gopinath K, Srinath S et al. Effects of yoga on natural killer cell counts in early breast cancer patients undergoing conventional treatment. Med Sci Monit 2008 Feb;14(2):LE3-4. [9] http://www.healthfinder.gov/news/newsstory.aspx?docID=630758 [10] http://nccam.nih.gov/health/yoga/introduction.htm

ACKNOWLEDGMENTS

The Triple Helix at UChicago would sincerely like to thank the following groups and individuals for their generous and continued support:

Pamela Martin Robert Richards John Boyer Robert Rosner Rick Shweder Rick Kittles

If you are interested in contributing your support to The Triple Helix’s mission, whether ﬁ nancially or otherwise, please feel free to visit our website at http://uchicago.thetriplehelix.org. © 2009 The Triple Helix, Inc. All rights reserved. The Triple Helix at UChicago is an independent chapter of The Triple Helix, Inc., an educational 501(c)3 non-proﬁt corporation. The Triple Helix at Uchicago is published once per semester and is available free of charge. Its sponsors, advisors, and Uchicago are not responsible for its contents. The views expressed in this journal are solely those of the respective authors.

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