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GeneWatch THE MAGAZINE OF THE COUNCIL FOR RESPONSIBLE GENETICS | ADVANCING THE PUBLIC INTEREST IN BIOTECHNOLOGY SINCE 1983 VOLUME 26 NUMBER 4 | AUG-OCT 2013 ISSN 0740-9737 Sherine Hamdy on Egypt’s complicated state-sponsored “Muslim bioethics” Kim TallBear on genomic researchers at odds with indigenous origin narratives Becky McClain on her experience as a whistleblower who took Pfizer to court (and won) Featuring:

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Religion & Genetics

Text of GeneWatch Vol. 26 No. 4

  • GeneWatchTHE MAGAZINE OF THE COUNCIL FOR RESPONSIBLE GENETICS | ADVANCING THE PUBLIC INTEREST IN BIOTECHNOLOGY SINCE 1983

    Volume 26 Number 4 | Aug-oct 2013

    ISSN 0740-9737

    Sherine Hamdy on Egypts complicated state-sponsored Muslim bioethicsKim TallBear on genomic researchers at odds with indigenous origin narratives Becky McClain on her experience as a whistleblower who took Pfizer to court (and won)

    Featuring:

  • August-OctOber 2013 2 geneWAtch

    GeneWatch is published by the Council for Responsible Genetics (CRG), a national, nonprofit, tax-exempt organization. Founded in 1983, CRGs mission

    is to foster public debate on the social, ethical, and environmental implications of new genetic technologies. The views expressed herein do not necessarily represent

    the views of the staff or the CRG Board of Directors.

    Address 5 Upland Road, Suite 3 Cambridge, MA 02140 PhOne 617.868.0870 FAx 617.491.5344

    www.councilforresponsiblegenetics.org

    boArd of directorssheldoN KrimsKy, Phd, boArd chAir

    Tufts University

    eVAN bAlAbAN, PhdMcGill University

    PAul billiNgs, md, PhdLife Technologies Corporation

    sujAthA byrAVAN, PhdCentre for Development Finance, India

    robert desAlle, PhdAmerican Museum of Natural History

    robert greeN, md, mPhHarvard University

    jeremy gruber, jdCouncil for Responsible Genetics

    rAyNA rAPP, PhdNew York University

    PAtriciA WilliAms, jdColumbia University

    stAff

    Jeremy Gruber, President and Executive DirectorSheila Sinclair, Manager of Operations

    Samuel Anderson, Editor of GeneWatchAndrew Thibedeau, Senior Fellow

    Vani Kilakkathi, Fellow

    coVer desigN Samuel W. Anderson

    editoriAl & creAtiVe coNsultANtGrace Twesigye

    GeneWatchAugust-OctOber 2013VOlume 26 number 4

    editor ANd desigNer: Samuel W. AndersoneditoriAl committee: Jeremy Gruber, Sheldon Krimsky,

    Ruth Hubbard

    Unless otherwise noted, all material in this publication is protected by copyright by the Council for Responsible Genetics. All rights reserved. GeneWatch 26,4

    0740-973

    This issue focuses on intersections and interactions between religion and genetics. Its one of those topics that, when you start pitching it to potential contributing writers, can begin to sound absurdly broad and open-ended. As you might expect, we ended up with articles all over the map, where genetics could refer to anything from medical genomics to human evolution and reli-gion could refer to anything from Christianity to Islam to the field of genetics itself. Although taking on a topic as expansive as religion + genetics presents some behind-the-scenes challeng-es, I think it also produces a particularly accessible end product. I like to point out in this space when an issue of GeneWatch has something for everyone, and this time around its particularly true.

    A couple of the more specific topics covered in this issue were rather close to home for me. I wont pretend its a coincidence; when Jeremy (Gruber, Executive Director of CRG) and I first dis-cussed doing a religion issue, Christian Creationism and Amish genetics both came quickly to mind. I grew up in Ohios Amish country and had read some news articles covering the prevalence of genetic disorders in the Amish community in what I thought might be an overly simplistic way (as so often happens when non-Amish people comment on the Amish, from CNN to Weird Al Yankovic songs to, worst of all, reality TV). That led to an in-terview with Hal Cross [page 8], who, having worked on genetic disorders in the Amish community since the 1960s, would have to be considered the leading expert on the subject.

    The subject of Christian Creationism, especially the aggres-sive sort which opposes the basic principles of natural selection, hits especially close to home. I grew up in an area where con-servative Evangelical Christianity was mainstream. I had friends whose parents used free thinker as a derogatory term, and it was common to describe oneself as a fundamentalist Chris-tian. I remember people saying The Theory of Evolution the way that many of the same people would later say Barack Hus-sein Obama. My parents had taught me about evolution, so I

    Editors Note Samuel W. anderSon

    comments and submissionsGeneWatch welcomes article submissions, comments and letters to the editor. Please email [email protected] if you would

    like to submit a letter or any other comments or queries, including proposals for article submissions.

    founding members of the council for responsible geneticsRuth Hubbard Jonathan King Sheldon Krimsky Philip Bereano

    Stuart Newman Claire Nader Liebe Cavalieri Barbara Rosenberg Anthony Mazzocchi Susan Wright Colin Gracey Martha Herbert

    Continued on page 7

  • geneWAtch 3VOlume 26 number 4

    GeneWatch Vol. 26 No. 4

    4 The Evolution of Religiosity Is the existence of religion, as a cross-cultural universal, the result of something else shared across cultures: the human genome? By David P. Barash

    8 A Complicated Inheritance How do rare genetic disorders fit into the Amish way of life? Interview with Harold Cross

    11 Tell Me a Story: Genomics vs. Indigenous Origin Narratives Indigenous critics worryfor good reasonthat an insidious sort of racism persists in some genomic research, especially when its sights are set on indigenous peoples and their origins. By Kim TallBear

    14 Delicate Decisions Assisted reproductive technologies raise complicated questions for Christians about faith, about suffering, and about compassion. By Ellen Painter Dollar

    16 Muslim Bioethics, Official and Unofficial In Egypt, a code of bioethics is often handed down if not always adopted by an amalgamation of church and state. Interview with Sherine Hamdy

    18 Is Genetics a Religion? Maybe not, but it may not be a stretch to say Gene is the new G word. By Kenneth Weiss and Anne Buchanan

    21 Religion and Genetics: An Inextricable Link Religion and medical genetics share similar goals, most important of which is promoting the wellbeing of people. By Amy Mueller and Michael A. Grodin

    24 Sharing Decision Making (Without Sharing a Religion) Despite many clinicians hesitation to go there, patients religious preferences can be genuinely engaged in the application of clinical genetics. By Joseph B. Fanning

    27 Bringing the Lost Tribes Home Israels Law of Return puts the state in the position of answering a complex question: Who is Jewish and who isnt? By Diana Muir Appelbaum and Paul S. Appelbaum

    29 Bad Science: Genetics, as Misread by Creationism Creationists often try to use (and, in the process, grossly misuse) the field of genetics to disprove evolution. By Glenn Branch

    31 Can Faith Broaden Reason? A biologist reflects on his religious life. By Robert Pollack

    * * * *

    35 Wanton Misconduct The story of a whistleblowers decade-long struggle against one of the worlds largest corporations. By Becky McClain

    39 Endnotes

  • August-OctOber 2013 4 geneWAtch

    universal: shared aspects of the hu-man genome.

    But what?The most obvious possibility is a

    God gene. Although such a gene was purportedly discovered more than a decade ago, subsequent re-search has been unable to confirm this claim. Far more likely is a gen-eral, genetically influenced tendency to accept authority, to venerate des-ignated leaders, to be positively in-fluenced by ritual (especially when socially shared), and so forth. None-theless, the evolutionary mystery in this case goes beyond the need to locate one or more presumed reli-gion-promoting alleles. Even in the unlikely eventuality that one or more such genes could be identified, a deeper and more interesting mystery remains: why would any religion-promoting genetic system have been evolved?

    As philosopher Daniel Dennett has pointed out, if we see a large mammal rooting around in the mud, it is reasonable to conclude that it is seeking food; i.e., the adaptive sig-nificance of such behavior is easy to imagine. But if the animal regularly interrupts such a clearly adaptive ac-tivity to do somersaults, we are legiti-mately inclined to ask why. Looking, for example, at Muslims interrupting their lives to pray five times each day, at Jews refusing to use electricity or even ride in a car on their Sabbath, at Hindus circumnavigating the 52 km route around holy Mt. Kailash

    making full-body prostrations on their knees the entire way, or Chris-tians donating 10% of more of their income to their churches, evolution-ists cannot help seeing the biological equivalent of truffle-pigs doing cart-wheels. In short, it is not biologically satisfying to conclude that religion exists because of a religion geneeven in the unlikely event that such a gene or gene complex existsbe-cause this begs the question of why evolution has favored it.

    Many different hypotheses can be suggested to explain the evolutionary mystery of religion. Following is an abbreviated list of some of the more intriguing possibilities. These are ex-amined at greater length, along with other, similar mysteries such as the existence of art, consciousness, our large brains, along with a panoply of sexual puzzles, in my book Homo Mysterious: Evolutionary Puzzles of Human Nature (2012, Oxford Uni-versity Press).

    A Viral Meme

    One possibility is that religion ex-ists and has been promoted despite being maladaptive, or at least be-cause its biological payoff is enjoyed not by those people who partici-pate in various religions, but instead by the unit(s) that are the cultural equivalent of genes; namely, memes. Whereas genes are entities of nucle-ic acid that reside in living bodies, memes are entities of memory and

    No biologistindeed, no well-educated and thoughtful personcan be in any doubt that human be-ings are the product of evolution by natural selection. Nonetheless, close attention to Homo sapiens reveals a number of evolutionary mysteries, aspects of our shared humanity that are almost certainly a result of na-ture (i.e., evolution by natural selec-tion), but whose precise evolution-ary causation is currently obscure. Among these mysteries of human nature, one of the more perplex-ingand fraughtis the question of religion.

    Of course, it is not guaranteed that human religiosity has evolved at all, in the biological sense. There is con-siderable variability in religious prac-tices worldwide, which at least opens the possibility that the underlying causation is simply cultural tradition and social learning, which vary from place to placeas does, for example, human language. But even as culture and social learning obviously deter-mine the detail of what particular language is spoken by what particu-lar people, it is also true that all nor-mal human beings end up speaking some sort of language; moreover, these languages typically share what linguists designate a deep structure. This basic pattern seems likely to ap-ply to religion, too. Thus, the simple fact that religion is what anthropolo-gists call a cross-cultural universal could suggest that it derives from another, underlying cross-cultural

    The Evolution of ReligiosityIs the existence of religion, as a cross-cultural universal, the result of something else shared across cultures: the human genome?By david P. BaraSh

  • geneWAtch 5VOlume 26 number 4

    devices that are themselves hyperac-tive, readily perceiving agency in the universe. This hypothesis, like that of viral memes, is uncongenial to believers since it suggests that al-though Agency Detection Devices were adaptive (and probably still are), when it comes to religion, they overshoot and as a result, weve been HADD.

    Theory of Mind

    Related to the Overshoot Hypoth-esis, but more specific, is one based on what psychologists call Theory of Mind (ToM). Basically, this is a comparatively advanced mental ca-pacity and one that has almost cer-tainly been adaptive: the ability to mind read, to create a mental map of what someone else is thinking, and therefore what they are likely to do. The next stepand one that perhaps is necessarily connected to ToMcould well be a tendency to attribute mind and intentionality to various other phenomena such as volcanoes, hurricanes, tornadoes, thunder and lightning, droughts, floods, and so forth, which, unlike another person or an animal, lack intentionality but lend themselves to efforts by obser-vant human beings to modify or pro-pitiate them.

    be a tendency to carry such interpre-tations farther than any actual situ-ation would necessitate, and there-fore seeing agency in the world, not only when it is really there but even when it isnt, especially when potentially directed at ourselves and thus important to us. We find hu-man faces in the moon, armies in the clouds, wrote David Hume in The Natural History of Religion, and by a natural propensity, if not corrected by experience and reflection, ascribe malice and good will to every thing that hurts or pleases us. And some-times, not just to those things that hurt or please us, but to every thing, period.

    The idea, in brief, is that human beings are especially prone to detect or imagine that these worldly agents are directed toward us. Sometimes they are, after all, and when this is the case, better safe than sorry. A rustling in the grass could be a field mouse or a poisonous snake. In such cases, better to assume that such stimuli are in fact aimed at us, since the consequence of being wrong could be serious. The result would then be a human penchant for wield-ing an array of Hyperactive Agent Detection Devices (HADD), which arent devices for the detection of hy-peractive agents but rather detection

    information that reside in society. Genes are inherited biologically, via reproduction; memes are acquired culturally, via teaching and imita-tion. Genes are Darwinian, projected across generations via reproduction and spreading by the process of or-ganic evolution; memes are Lamarck-ian, acquired characteristics that are inherited culturally, passed along from ancestors to descendants, from parent to child as well as from adult to adult, rapidly and nongenetically via conversation, imitation, songs, schooling, books, radio, television, YouTube, email, Twitter, Facebook and, yes, religious indoctrination.

    Overshoot

    Another possibility is that religion has evolved because natural selection has favored the ability on the part of our ancestors to interpret causation in the world around us. It is clearly adaptive for a creature, if sufficient-ly intelligent, to know the causes of things, especially when these things have important consequences for the creature in question: a gazelle likely to run away and/or to be found in particular habitats, a sabre-tooth li-able to pounce, another hominin in-clined to compete or to mate, and so forth. The next step, then, could well

  • August-OctOber 2013 6 geneWAtch

    deitiesderives from a this-worldly primate tendency to worshipfully obey a dominant leader, who nor-mally provides defense, facilitates ac-cess to certain necessities of life, and is dangerous to disobey. Just as many non-human primates maximize their fitness by almost literally bowing to one or a small coalition of dominant individuals, similar obeisance to one or more imagined (or real) dominant deities might be similarly favored. There seems little doubt that numer-ous payoffs can be derived by those followers (of religion no less than a dominant and successful secular leader) who participate in a group whose shared followership results in greater coherence and thus, en-hanced biological and social success.

    A Role for Consciousness?

    Another group-related payoff to religiosity might be connected to what appears to be the uniquely hu-man level of individual conscious-ness. As individuals evolved greater self-awareness (the adaptive value of which constitutes yet another evolu-tionary mystery, but one for which there are numerous hypotheses), they might well have become increas-ingly aware of the extent to which their personal, self-oriented incli-nations differ from what is optimal for the larger social group. As a re-sult, insofar as natural selection was somewhat driven by group selection, it is possible that religion, with its supra-individual norms, could have effectively imposed restraints and models that conscious individualshowever reluctantlymight have followed, in the interest of serving the greater good. And of course, we cannot rule out the possibility that what many religions represent as the greater good is often a benefit accru-ing to a small number of individuals

    young search for substitutes to their developmentally more primitive (but nonetheless biologically appropriate) perception that their parents are all-wise and all-powerful.

    Group Coordination

    Religiosity is not simply a matter of individual persuasion; a crucial aspect of nearly all religions is their social dimension. In short, religious belief might serve an adaptive role by coordinating individual actions and even inducing some individuals to engage in certain behavior (such as self-sacrifice during war) that con-vey a benefit to the group. This hy-pothesis is especially controversial among evolutionary biologists, since it is widely accepted that natural se-lection is only effective at the level of individual organisms and their genes, rather than between groups. This is because altruistic behavior direct-ed at other group membersunless the recipients are genetic relativeswould be strongly selected against within such groups. Nonetheless, it is at least possible that group selec-tion might have been uniquely effec-tive among Homo sapiens, especially when it comes to religion, since hu-man beings are unusual among ani-mals in being able to enforce group norms, something that is especially characteristic of many religions, among which apostasy tends to be severely punished.

    Other group-level social benefits of religion are also imaginable: re-ducing the proportion of freeloaders, enhancing communication among believers, raising confidence in each others behavior, and so forth.

    God as Alpha Male

    It is also possible that religious beliefand particularly faith in one or a small number of very powerful

    The Big Brain Effect

    Another consequence of having a big brain (which itself presumably evolved for a variety of possible rea-sons, including efficient communi-cation, planning, tool use, sophisti-cated mate selection, elaborate child care, etc.) could well have been a felt need to explain things, including somesuch as death, questions of meaning in life, perplexing weath-er events, and so forththat dont readily lend themselves to scientific answers. As anthropologist Clifford Geertz pointed out, people simply cannot look at the world in dumb astonishment or blind apathy, so they struggle for explanationsob-jectively valid or notresulting in-evitably in religious beliefs.

    Closely connected to the Big Brain Effect is the widespread and highly adaptive propensity of people, es-pecially when young, to learn from adults and others in authority. Af-ter all, a species with a lot to learn must be predisposed to accept in-struction. Thus, regardless of what actually generates religiosity among adults, once present it is likely to be avidly taken up by subsequent gen-erations. After all, adults have much of value to transmit to their offspring: what foods to eat and what to avoid, who is a friend and who an enemy, rules of social interaction as well as language itself. It is therefore no coincidence that children are over-whelmingly prone to adopting other traditions from their parents, includ-ing the latters religious persuasion, even though in some cases, such learning might not be biologically adaptive. Related to this, and not entirely independent from it, would be Freuds suggestion in The Future of an Illusion that religious belief is an infantile neurosis in which the

  • geneWAtch 7VOlume 26 number 4

    On the other hand, religious persua-sion can be a source of intolerance and violence, and no small amount of hypocrisy. However, it is one thing to ask whether, on balance, religions are morally beneficial, and something different to inquire whether they are biologically beneficial by virtue of their ethical teachings and the social confidence and coherencewhether objectively justified or notthat they generate.

    In summary, the jury is still out on whether religion evolved at all (i.e., whether religiosity is in any direct way underpinned by genotype), and if it is, whether its evolution proceed-ed via group selection, which, in turn, might have favored those groups that were more violently cohesive dur-ing war and morally cohesive during peace. In my opinion, however, it is highly likely that natural selection, whether acting at the level of individ-uals or of groups, has been respon-sible for the existence as well as the perseverance of religion.

    Religion poses other genetic puz-zles. For example, religious funda-mentalistsfrom a variety of differ-ent faithsconsistently oppose birth control, which raises the question of whether there exists a gene-connect-ed susceptibility to fundamentalist beliefs, with natural selection favor-ing such a propensity. There is no question, in any event, that Homo sa-piens presents many as-yet-unsolved evolutionary mysteries, of which re-ligiosity itselffascinating as it isrepresents only one. nnn

    David P. Barash, PhD, is a Professor of Psychology at the University of Washing-ton. He has written numerous books on animal behavior, evolutionary psychol-ogy, and Peace Studies.

    not uncommonly, religious leaders themselves. Similar, therefore, to the viral meme hypothesis, it could be that certain especially powerful and charismatic religious leaders sim-ply succeed in manipulating their less powerful and more compliant followers.

    There is a common denomina-tor uniting the last few hypotheses we have just considered: namely, that religious commitment involves forswearing certain personal gains while benefitting other individuals. Insofar as this basic pattern has con-tributed to the evolution of religious belief and practice, the puzzle of re-ligions origin corresponds with an-other puzzle: the evolution of altru-ism. This, in turn, opens up a whole series of theoretical and empirical questions, beyond the scope of the present article, but suggesting how what appears to be a single evolu-tionary mystery rapidly ramifies into numerous others.

    According to historian Edward Gibbon, writing roughly a century after Locke, The various modes of worship which prevailed in the Ro-man world were all considered by the people as equally true; by the philosopher, as equally false; and by the magistrate, as equally use-ful. Most observers of religion agree that when it comes to morality and ethical behavior, the balance sheet of most religions is difficult to interpret, although it is plausible that the use-fulness of religion extends to natu-ral selection (operating possibly on groups), no less than to Roman mag-istrates (presumably operating via its effect on rendering social relations more predictable and citizens more law-abiding). Religions certainly claim to be a source of positive moral values, and they are typically per-ceived as such by their proponents.

    was never under the impression that there was any actual scientific debate about the merits of natu-ral selection, even when one of my junior high science teachers openly begrudged that they werent al-lowed to teach Intelligent Design as an alternative theory. (See Glenn Branchs article on page 29 for more on this juicy subject.) But when your pastor rails against the teach-ing of evolution and when even the science teacher seems uncertain about it, you can see how a lot of kids would be skeptical about the factuality of evolution.

    By later on in high school, I was one of the handful who willingly took up the torch and openly de-fended natural selection as fact. This usually came in the form of arguments with Creationist class-mates who, having found out that I believed in evolution (it was often couched that way, as a belief), came to me to try out their latest argument against evolution, usu-ally in the form of pointing out one thing related to evolutionary theory which was possibly flawed (carbon dating was a favorite target) and therefore meant the whole thing was obviously a house of cards. It was maddening at the time, but I actually credit those arguments for teaching me not just how to stand up for what you believe in, but the importance of knowing why you believe what you believe. nnn

    Editors Note, continued from p. 2

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    it, of a group. This may be nomads in Saudi Arabia, it may be enclaves of families in India or China, but in this country those conditions are met primarily by Amish and also some Mennonite groups, in communities that tend to marry among themselves and admit very few outside people. So what you end up having is what we call a founder effect. Whenever a small group of individuals found a community, the descendants of these founders obviously carry these genes as well. So since there are relatively few founders, generally, that means if the founders had a recessive muta-tion and the group continues to inter-marry and doesnt admit many out-side people, it increases the chances that a male and female, each with the same recessive mutation, will meet each other. This is what leads to au-tosomal recessive diseases.

    From a genetics point of view, or a scientific point of view, this provides an opportunity to look for mecha-nisms of disease, to help us under-stand biochemical pathways and the nature of health and disease. Thats what makes groups like the Amish and the Mennonites useful to study,

    but of course there are others around the world as well.

    Would it make much difference if there were more marriages across different communities within the same faithsay, between an Amish community in Ohio and one in Indiana?

    Thats a very good question, and the Amish have actually raised that question as well. But heres the sce-nario, in very broad terms: The first Amish that immigrated settled in eastern Pennsylvania in the 18th cen-tury. There was another whole wave that came over in the 19th century, and they tended to skip over east-ern Pennsylvania and settle more in western Pennsylvania, and from there they settled in Ohio and Indi-ana, and in many other communities in other states. So it really doesnt do a whole lot of good, say, for some-one in Holmes County (Ohio) to say, Im going to go to Indiana to find a wife, someone whos not related to me, because theyre probably re-lated as wellthe Indiana com-munity came from the same

    Harold Cross, MD, PhD, began studying genetic disorders in the Amish commu-nity of Holmes County, Ohio, in the 1960s and founded the Windows of Hope proj-ect to improve Anabaptist communities access to information about genetics and inherited conditions. He was born into the Amish community of Elkhart County, Indiana.

    GeneWatch: Certain genetic dis-orders are more common, some-times much more common, in some Amish communities. Could you say a bit about the scope of the problem and your work on it?

    Harold Cross: Were specifically in-terested in autosomal recessive disor-ders. For this sort of disorder, one ge-netic mutation on one chromosome usually does not cause a diseaseyou have to inherit the mutation from both sides, which means that both parents contribute the defective gene. That kind of situation, where both parents carry a single copy of the same rare mutation, is primarily present in groups of individuals who tend to marry others who are some-what related to them, or at least come from the same founder, as we call

    A Complicated Inheritance How do rare genetic disorders fit into the Amish way of life?intervieW With harold CroSS

  • geneWAtch 9VOlume 26 number 4

    of individuals born with autosomal recessive diseases, theyre oftentimes fairly local. For example, one disease that we have worked on, that I found in the 1960s, is only found in Holmes County. Weve never found an in-dividual outside of Holmes County with this disease. So the chances of somebody coming from outside and contributing that mutation is pretty low, because it seems to be restricted to the Amish themselves.

    But having a closed community also excludes other diseases. Take sickle cell anemia: As long as no one who carries that gene enters the Amish community, the Amish will not have sickle cell anemia. And there are many other conditions which the Amish dont have because of this. So its also a protective mechanism.

    Youve been working on this since the 1960s. How have you seen this research help Amish communities?

    As you say, Ive been doing this for forty-some years, and obviously the end result were looking for is a ben-efit to the communities. But how do you do that? Well, a lot of people are very grateful to know this is a genet-ic defectit wasnt because I ate the wrong vitamins or vegetables or rode horses too much. There are psy-chological benefits that come from knowing why your child is the way that he or she is.

    But what youd really like to do

    are good genealogical references, but it doesnt usually get checked out. The problem, though, isOK, lets say you marry your second cousin. What happens is that the progeni-tors of those second cousins them-selves are related in some way, and their parents are related, etc. The de-gree of relatedness is cumulative so couples are more closely related than a simple 3 or 4 generation pedigree would suggest.

    So thats where the founder effect comes in.

    Thats right, all those ancestors were also related to each other. Of course, there are new mutations happening all the time, we all have them; but in general society, the chances of meet-ing up with someone who has the same rare new mutation is pretty small. Thats why most of these re-cessive diseases are extremely rare, with the exception of an isolated community, where we can find, in some cases, a substantial number of individuals with the same problem.

    And one of the things that main-tains that founders effect is that

    not many people convert to be-come Amish, right?

    Thats true, and this is an ar-gument that I like to point out:

    While groups like the Amish can have a fairly high number

    people who founded the Ohio com-munity. The eastern Pennsylvania Old Order Amish seem to be geneti-cally somewhat different. They have different surnames, different blood groups, and to some extent different diseases. But for most of the rest of the Amish, it really doesnt do much good to move to another communi-ty, because youre just going to find more relatives there!

    Do Amish couples usually look back at family trees before getting married?

    Well, they dont really. Theres an embedded prohibition against mar-rying first cousins, so they certainly check that out. Some of them might know they might be second cousins, but for third and fourth cousins, they dont usually check that far back. The information is freely available, there

  • August-OctOber 2013 10 geneWAtch

    free will to do whatever they want to do.

    When you do research within the Amish community and come back and share those results, is it very well received?

    Very much so. You know, theyre es-sentially self-insured, they have their own funds they use to help families out, and theyre very aware of the burden of genetic diseases on the community and the cost of it. We of-ten get families who find out about what were doing and ask if we can come do testing for them.

    Here is the best example: We dis-covered, about 7 or 8 years ago, a new mutation that causes hypertro-phic cardiomyopathy, a heart condi-tion which can cause sudden death at any age. We found the mutation that causes it, and we began testing for that. In adults, thats a dominant disease, so its passed along with 50% probability to every child that you have. Weve been at this for a few years, trying to identify indi-viduals who carry the mutation, be-cause theyre at risk of sudden death. And this has real health benefitsif caught in time, treatment can save your life. Well, it didnt take long un-til we had people coming out of the woodwork asking to be tested. Peo-ple are very tuned into heart disease, so this has really resonated in the community.

    As a general rule, Amish are very interested in knowing about their genes and the diseases that they cause, and now that weve been work-ing in this community for yearswe make a couple trips there every year, and we have some people working there full timewere getting invited to reunions and special occasions be-cause people want to meet us. nnn

    a disease. And they leave it up to the individual to decide whether they want to do it.

    Now, ultimately, I dont want to change the Amish. Its not my busi-ness, and we shouldnt interfere with them. But I do think that knowledge is power. We offer free testing to any-one who wants it, and there are some parents who say they want their chil-dren tested. Now, what you do with that information is another thingit doesnt do much good to get tested and find out you have a mutation if you dont also test your partner or prospective partner.

    Im speaking frankly with you herewere not necessarily promot-ing any of thisbut if we can make information available about trans-mission of diseases and basic genet-ics, then hopefully the population will use that to their benefit. But thats a slow going process.

    Is there some way of reconciling things like premarital testing with that very important belief in Gods will?

    We have had meetings with some bishops and community leaders and raised that question: Would people accept this, do they think its an ac-ceptable thing to do, or is it against their Ordnung. And its really inter-estingI thought there would be a more uniform opinion, but there re-ally isnt. One bishop says, I leave it up to the families, and another says, Im not sure we want to do that, Im concerned about what it might lead to. So there isnt a uniform opinion on this, but maybe eventually it will be addressed and become part of the discussion.

    Again, though, my role in all this is just primarily to tell them what infor-mation is out there, what tests can be done, and obviously its up their own

    is reduce the number of individu-als born with severe developmental regression or neuro-degenerative diseases. This can be complicated sometimes because of Amish reli-gious teachings. For example, we could do in utero testing, but it doesnt really matter if you find out that an unborn child has a disease if the parents say, well, thats Gods will, thats the way its going to be. So that kind of work which is done in the general population really doesnt work for the Amish. Now, one of the things Ive observed over the years is that younger generations are much more interested in becoming knowl-edgeable about some of these things, and they avail themselves of comput-ers. You ought to see the numbers of horse and buggies tied up outside the county libraries! And you go in there, and there are all these Amish young men and women on the computers, looking up stuff. So theyre much more informed and more anxious to see what could be done, much more than the older individuals, who tend to say Its Gods will, its the way it is. So theres an opportunity, and its something that were very interested in exploring, mainly for the education of younger couples who are building their families. If you knowand we can test this in both parentsthat they each carry the same mutation and have a 25% chance of having a child with this disease, they can de-cide whether they want to risk it. So we can do that, we can certainly do premarital and later testing to deter-mine whether each parent carries a gene. Its not unlike the big push now among Ashkenazi Jews, encouraging young people to come in before they have kids and get anonymously test-ed. They dont have to tell you what you carry, but they say you both have a gene which, if you both pass it on to your children, they will have

  • geneWAtch 11VOlume 26 number 4

    bodiesboth dead and livingmate-rial cultural artifacts, and indigenous cultural narratives in the service of academic knowledge production.

    Critics point out that such knowl-edge rarely serves indigenous peo-ples interests and can actively harm them. In the 19th and early 20th centuries massacre sites and graves were plundered for body parts to be used in scientific investigations that inform todays anthropological and biological research on Native Ameri-cans. Throughout the 20th century, indigenous peoples around the world witnessed the too common practice of helicopter researchquick sam-pling without return of results or benefit to subjects. Indigenous DNA

    samples and data taken in earlier de-cades when ethics standards were lax continue to be used and cited in con-temporary investigations, bringing those injustices into the 21st century. And new, more ethical research still takes time from other pressing proj-ects and needs. Informed commu-nity review and collaboration with researchers will increase community benefit, but informed participation has costs. It takes resources to build capacity to sit at the table as equals instead of as vulnerable subjectsas simply the raw materials for science.

    Indigenous critics also describe abstract risks that eventually contrib-ute to legal and material harm. They worry about the objectifying nature

    On April 13, 2005 the Indigenous Peoples Council on Biocolonialism issued a press release1 opposing the Genographic Project, which aimed to sample 100,000 indigenous and other traditional peoples to trace the migratory history of the human species and map how the Earth was populated.2 IPCB critiques Geno-graphic, and the Human Genome Diversity Project before it, as the contemporary continuation of colo-nial, extractive research. The analy-sis is also a fundamental historical examination of Western science. IPCB foregrounds the intellectual and institutional authority that sci-ence, a powerful tool of colonizing states, has to appropriate indigenous

    Tell Me a Story: Genomics vs. Indigenous Origin Narratives Indigenous critics worryfor good reasonthat an insidious sort of racism persists in some genomic research, especially when its sights are set on indigenous peoples and their originsBy Kim tallBear

    August-OctOber 2013 11 geneWAtch

    detail from Dakota Sioux Winter Count, 1890/1900

  • August-OctOber 2013 12 geneWAtch

    claim the right to tell the only true story of human history. While the empirical data informing the two re-spective approaches differs, they are both laden with longstanding narra-tives of indigenous isolation, unen-lightened thought, and deficiency.

    But it is very difficult for many non-indigenous people to see what is so clear to many of us. On the day that IPCB issued its press release call-ing for a boycott of the Genographic Project, a lively genetic genealogy listerv (genealogists who use genet-ics to fill in the gaps in their family trees) erupted in defense of Geno-graphic and human genome diversity research. Populated overwhelmingly by self-identified European-Ameri-cans, recent ancestry in Europe is the most popular topic of conversation on this particular list. Native Ameri-can ancestry is the second most pop-ular.4 (Unlike the law of hypodescent in which someone with any African Ancestry should be categorized as black and not white, U.S. race poli-tics have historically sanctioned the absorption of red into the white body.) Many of the genetic genealo-gists online that day have a deep un-derstanding of genetic science but could not grasp the basics of IPCBs incisive political critique. Indigenous critics do not simply object to human genome diversity and migrations re-search that contradicts indigenous creation narratives, but condemn the power that science has had to define indigenous peoples histories, identi-ties, and futures. They point out that indigenous peoples are still subject to exploitation in research. Yet one lister had this to say:

    There are some indigenous people who fear anthropological DNA test-ing for pretty much the same reasons that some people fear genealogical DNA testing. They are comfortable with their myths & not particularly

    political insights, but misunder-stands indigenous creationism as no different from the type of Christian creationism currently challenging the biological sciences and school curriculums.

    In the same way that scientific thinkers defend the veracity of the evolutionary narrative (narrative does not necessarily mean myth) and scientific education against the cre-ation science of some Christians, in-digenous critics call out scientists and the church alike for their missionary tactics and their distortion of indig-

    enous knowledge. Indigenous critics note that Western cultural and his-torical standpoints enacted through proselytizing scientific or Christian intellectual traditions get wielded as universal swords of truth over less powerful peoples. Indigenous critics see clearly the ideological biases in both scientific and clerical traditions, which before Darwins Origin of Spe-cies, were intimately entangled. To-day, they are not as disentangled as their respective practitioners would believe. Both science and the church

    of human genome diversity research in which indigenous and other iso-lated peoples are used to represent ancient, less admixed populationsas therefore less evolved and not ac-tive parts of the modern world, as vanishing, as less alive. They worry that the explicit racism that plagued the physical and social sciences of earlier centuries, which assumed evolutionary hierarchy among hu-mans, the impending death of the In-dian unable to cope with modernity, and a divinely sanctioned Westward expansion, continues to insidiously inhabit modern genomics. And they should be worried. Influential West-ern narratives about indigenous cul-tural stasis and notions of purity still plague the non-genomic sciences, in-cluding social and policy sciences and the humanities, with great impact on indigenous lives. Physical and cultur-al anthropologists, legal experts, and historians are called upon by the sci-entific state to adjudicate indigenous claims to rights or resources, e.g. to determine if a group constitutes an authentic tribe worthy of recogni-tion, or whether American Indian religious freedom is actually being impeded by the actions of loggers, fishers, or rock climbers at a sacred site. In this intellectual climate, it is no wonder that genome science with its considerable cultural influence is viewed as a potential threat.

    When indigenous critics exclaim, We will not stand by while our an-cestors are desecrated in the name of scientific discovery, or Our creation stories and languages carry informa-tion about our genealogy and ances-tors. We dont need genetic testing to tell us where we come from,3 they are not simply expressing religious or cultural concerns. To character-ize them as simply anti-science, or as religious zealots not only misses their sophisticated historical analyses and

    Being allergic to the recognition of power relations in the scientific enterprise no

    doubt impedes ones ability to truly grasp indigenous analyses.

  • geneWAtch 13VOlume 26 number 4

    presumed in the genomic narrative that is absent from the indigenous narrative. Indigenous notions of peoplehood as emerging in relation with particular lands and waters and their nonhuman actors differ from the concept of a genetic population, defined as moving upon or through landscapes. Therefore, it is true that indigenous creation narratives chal-lenge genomic narratives, but when read in all of their complexity one can see the veracity present in in-digenous creation narratives and the debatable conceptual and material presuppositions of genomic narra-tives. Indigenous groups are not anti-experimentation or technology, nor reject all new knowledge emerging from sciences, but often want to in-tegrate that knowledge within their world views.

    Indigenous peoples do not expect scientists to adopt their stories of origin. Theirs are not generally pros-elytizing traditions. But theywewant our political jurisdictions over our bodies and lands upheld and we want the power of our stories to shape our lives respected, and to not be deemed as untruths. The central paradox of 21st century human ge-nome research is that it is presented as global and anti-racist,5 but has advanced historically by violating subjects rights to self-governance, by appropriating their biological re-sources, and sometimes even their cultural narratives, and by de-valu-ing the truths and powerful values of those it seeks to include and connect. nnn

    Kim TallBear, PhD, is Associate Profes-sor of Anthropology at the University of Texas at Austin. She is the author of Na-tive American DNA: Tribal Belonging and the False Promise of Genetic Science (University of Minnesota Press, 2013).

    good of neutral science, that nature and culture are opposed. One cannot be a rigorous scientific thinker and indulge in politics. Of course, in-digenous critics call attention to the politics that always already inhabit science. But being allergic to the rec-ognition of power relations in the sci-entific enterprise no doubt impedes ones ability to truly grasp indigenous analyses.

    In addition to a politics allergy, scientific thinkers read indigenous creation narratives in an overly sim-plistic manner when they reject for example accounts of a people emerg-ing from a cave, or a hole in the ground. They miss central proposi-tions in such narratives that reveal how indigenous peoples understand the world and their place in it. For example, indigenous creation narra-tives provide values for living, nar-rate our common history, cohere us as Peoples (and not simply hu-man beings) with a common moral framework. They tie us to sacred landbases. Indigenous peoples un-derstand ourselves to have emerged as coherent groups and cultures in intimate relationship with particular places, especially living and sacred landscapes.

    Indigenous concepts of ancestry and group go far beyond genetic an-cestry evidenced in populations. They involve biological, cultural, and political groupings constituted in dynamic long-standing relation-ships with living landscapes and waterscapes that define our people-specific identities. This is an impor-tant difference between the way that indigenous peoples wield the idea of origins and the way that human genome diversity does. In the lat-ter case, landscapes or waterscapes are places through which humans and their molecules move and settle. An environment/human divide is

    interested in investigating anything that might shake their worldview. Clinging to tradition is not some-thing unique to indigenous people

    Another lister added: My Mohawk ancestors believed that the world came into being on the back of a turtle. Subsequent evidence from a variety of data sources such as the Hubble Telescope have prov-en this particular creationist theory to be incorrect. Archaeological and DNA evidence has allowed a robust but incomplete understanding of the correct origins of my ancestors. It is futile to play osterich [sic] and ignore what is staring us in the face. When the evidence speaks loudly one must listen or forever be clinging to false assumptions. Still, that does not in any way affect my deep respect for the traditions of my ancestors, but above all else I want to know the truth

    Native American and Christian

    perspectives that are critical of ge-nome knowledge are often seen to fall on the same side of a religion versus science divide. However, unlike Christianity, Native Ameri-can origin narratives are generally missing the will to convert and so are without inherent intolerance for other narratives, be they Biblical or evolutionary understandings. In the U.S., indigenous peoples often say they just want to be left alone to prac-tice their ceremonies without having them outlawed or losing access to sa-cred sites through land and resource grabs. So why the resistance? Cer-tainly, scientific thinkers do not have to worry about indigenous people imposing their religions in public school classrooms to the detriment of biology education standards. Even with the balance of cultural power on their side, scientific thinkers are taught to believe that science and politics should be separated for the

  • August-OctOber 2013 14 geneWAtch

    child with strong bones.Such a guarantee was appealing,

    especially given how we were captive to the pain of life with OI that sum-mer. For many who debate the merits of rapidly evolving reproductive and genetic technology, PGD is a clear positive advancement. Two pioneers of PGD, Anver Kuliev and Yuri Ver-linsky, labeled the technology a type of primary preventive medicine. For me, mired in caring for a fragile child spending her summer encased in var-ious pink fiberglass casts, consider-ing PGD as a straightforward means to rid my family of a painful malady was both appealing and practical.

    And yet I was haunted that sum-mer, even when we actually began a cycle of PGD (three days after our daughter broke her femur), by the sense that PGD is not quite so straightforward, not quite such a clear and obvious good. I obsessed far more over ethical questions, many of them related to my Chris-tian faith, than I did over the taxing logistics of an IVF/PGD cycle. And I found that few people in my Chris-tian circles, including friends and pastors, had any idea what questions we should even be asking, much less how to answer them.

    In American Christianity, the Ro-man Catholic Church stands alone as having addressed the ethics of repro-ductive technologiesfrom contra-ception and artificial insemination to PGD and surrogacyin depth. As I wrestled with our decisions around PGD, I corresponded with a good friend who is a Roman Catholic theo-logian specializing in sexual ethics. He introduced me to the essential

    ideas behind Catholic rejection of nearly all reproductive interventions, including PGD.

    Put in simplest terms, Catholic reproductive ethics are based on a beautiful theology of marriage: When a man and woman become one flesh through marriage and conceive a child, their love is liter-ally creating new life. Anything that interferes with or engineers this di-vinely given privilege is problematic. There is much more to Catholic re-productive ethics than that of course, including concerns over introducing third parties into the marriage con-tract (through gamete donation and surrogacy, for example), commodi-fying children (transforming them from gifts of God received with open arms to products manufactured by fertility clinics to meet parental stan-dards), and manipulating or destroy-ing human embryos.

    While many of my Catholic friends arguments (which were offered with an assurance that he would honor whatever decision we made) were appealing, my practical nature kept interfering. Its lovely to imagine that all children are created in love and welcomed with open arms, but even lousy, adulterous, or criminal sex can lead to conception. And the desire to have a child or not, or to have a healthy child rather than one with a genetic disorder, often reflects press-ing practical concerns (such as mon-ey) and/or an utterly human desire to spare ones children from suffering, rather than parental wishes to order up a certain kind of baby when and how they want.

    Also, Im not Roman Catholic. I

    During her third summer of life, my oldest daughter had three bro-ken bonesa broken arm in June, a broken tibia in July, and a broken femur in August. The thing we had most feared since Leahs birth was now happening. I was simultane-ously devastated and oddly relieved. I no longer had to wonder when my fragile girl would start breaking.

    Leah has osteogenesis imperfecta (OI), a dominant genetic disorder causing a collagen defect that leads to brittle bones and other musculo-skeletal problems. I have OI too, and any child of mine has a 50 percent chance of inheriting the disorder. For her first two years, Leah had no frac-tures, although she had gross motor delays related to muscle weakness. On her second birthday, she broke her tibia while climbing on a child-sized couch, purchased to give her a safer alternative to climbing on the regular couch. I could not make up a better introduction to the capri-cious nature of the disorder we live with. Then, when she was two-and-a-half came our terrible summer of one fracture after another. We felt bulldozed by her genetic destiny, and my genetic legacy.

    Also during that difficult summer, my husband and I were contemplat-ing whether to use preimplantation genetic diagnosis (PGD) to conceive another child. PGD involves doing a round of in vitro fertilization (IVF) and testing fertilized eggs for a par-ticular mutation. We could test for my and Leahs OI mutation, only se-lect fertilized eggs that did not have the mutation, and thus guarantee a

    Delicate DecisionsAssisted reproductive technologies raise complicated questions for Christians about faith, about suffering, and about compassion.By ellen Painter dollar

  • geneWAtch 15VOlume 26 number 4

    relationships. But my Christian faith, and my experience, also tell me that illness, injury, disability, and pain can do real damage to the spirit.

    I know, from the most strenu-ous sort of experience, that life with a broken body can be rich, full, and happy. I also know that little girls should not break their legs falling off a childs couch. OI is a menace. I will never stop feeling grateful that our younger two children escaped it. I will never stop grieving that our old-est daughter did not, even as I cannot imagine her being anyone other than the smart, lovely young woman she is becoming, and know that having OI has shaped her.

    Since making our childbearing choices, I have told my story to all sorts of audiences, particularly to Christian ones. My husband and I were almost completely alone with the choices we made, not because our Christian friends and pastors didnt want to help us, but because they couldnt. They didnt know how.

    I tell my story to raise questions and nurture conversation around the technologies that offer us the poten-tiala potential both promising and troublingto bear children free of genetic disorders. I do not share my story in order to tell people the right answers to these hard questions, be-cause I dont know what the right an-swers are. I do not know whether the choices we made were good or bad, right or wrong. We have the children we haveall three much-wanted, beautiful, imperfect, beloved. We made the choices we made. None of them were easy. nnn

    Ellen Painter Dollar is author of No Easy Choice: A Story of Disability, Par-enthood, and Faith in an Age of Ad-vanced Reproduction. She blogs about faith, disability, parenting, and ethics for Patheos, a web portal dedicated to reli-gion and spirituality.

    can be redemptive (bring about heal-ing and wholeness)? I had questions around money and medicine: What values were driving my fertility clin-ics desire for our IVF/PGD cycle to succeed? How did their values com-pare with ours? And then there were a host of questions around the nature of OI and, more broadly, disability it-self: By screening for OI (essentially, rejecting any potential children who might have OI), was I saying that I and my daughter, as people with OI, are less valuable than people with healthy bones? Is OI primarily an illness in need of fixing (or prevent-ing)? Or is it primarily an identitya manifestation of human diversity that ought to be valued and accom-modated, not fixed or prevented?

    As we went through the physically, emotionally, and financially draining steps of our IVF/PGD cycle, such questions preoccupied me, but an-swers were elusive. The day before Leah got the cast for her femur frac-ture taken off, I took a pregnancy test and learned that our PGD cycle had failed. Two weeks earlier, my doctor had implanted one fertilized egg that tested negative for OI into my uterus, but it did not implant.

    The weight of the ethical ques-tions that haunted me, combined with the financial and emotional costs of PGD, was too much. We did not do another PGD cycle. Instead, we conceived another baby naturally. We had another daughter, and a little more than two years later, a son who was also conceived naturally. Neither of them inherited OI.

    My Christian faith, and my expe-rience living with OI and raising a beloved child with OI, tells me that suffering can indeed be redemp-tive. My faith teaches that light can overcome darkness, that life is stron-ger than death. Hard, painful things can lead to greater wisdom, more abundant compassion, and stronger

    am a lifelong Episcopalian who took a detour of about a decade into evan-gelical and nontraditional progres-sive churches. As I discovered while contemplating PGD, Protestant re-productive ethics are practically non-existent, from a practical standpoint. Protestant theologians and ethicists have written extensively on issues such as prenatal testing and assisted reproduction, but they have largely done so in dense academic language. Such language is off-putting to a lay-person like me, not only because it is hard to understand, but also because such language speaks largely to the head, not the heart. And when we are talking about peoples babies, we must speak to the heart as well as the head.

    Furthermore, in many less-formal conversations around reproductive ethics (for example, on Internet com-ment boards), many Protestants tend to focus overly on abortion, trying to transfer their pro-life or pro-choice views directly to other reproduc-tive concerns. Decades of divisive, oversimplified debate around abor-tion have left Christians ill-equipped to engage in effective discourse and empathetic counsel around repro-ductive technologies such as IVF, prenatal testing, and PGD. They of-ten fall back on well-worn abortion arguments around the appropriate limits on freedom of choice and the moral status of embryos, for example, which are relevant but incomplete.

    As we cared for our daughter while undergoing PGD, my heart was hurt-ing and my head reeling with ques-tions that went far beyond the limits of choice and the status of embryos (although those concerns were there too). I was consumed with questions around suffering: Do I have a duty to spare our next child the suffer-ing associated with OI? What about the core Christian idea that suffer-ing (e.g., Christs death on the cross)

  • August-OctOber 2013 16 geneWAtch

    I think sometimes people trying to come up with this thing called Mus-lim bioethics are basically trying to add a Muslim flavor to what has already been developed as secular bioethics. Or you can define Islamic bioethics very differently, as saying we should go back to Medieval-era Islamic empires and see how doc-tors dealt with different ethical ques-tions. But for the most part, I think its inheriting a lot of secular bioeth-ics and pushing it through this very mechanistic idea of Islamic law. And I, for one, find that unsatisfactory as a practicing Muslim. I have different standards for how I evaluate the ethi-cal questions.

    Youve written on the idea of fatal-ism in the context of Islam. Can you say a little bit about how that plays out in a medical setting?

    For a lot of Western observers, Is-lamnot just Islam, other cultures too, but theres always been this idea that Muslims in particular are very fatalistic, and a lot of explanations of Muslim behaviors have been driven by this narrative of fatalism of Islam, because Muslims believe that God causes everything, God creates both evil and good, so everything that happens to a person throughout her lifetime is an act of Gods will. One of the big conundrums of Islamic theology lies in the question of that area between Gods will and human agency.

    My critique of framing Muslim re-sponses to bioethics in terms of these longstanding theological questions about humans free will vs. Gods omnipotence is that sometimes we are misrecognizing questions about inequality as fatalism. You might find even Muslim majority countries internalizing that view: That Mus-lim people are fatalistic, and thats why they wont come in for their follow-up treatment, or thats why they dont take the necessary precau-tions. What theyre not looking at is whether people have access to trust-worthy and quality healthcare, and why poor people in particular would be distrustful of medical intervention because of past negative experiences with it. Those structural questions about access to good quality care are often covered over by this narrative of fatalism.

    Can you say a little bit about the role of fatwas?

    A fatwa is, by definition, a response to a question. In the Sunni Muslim world, those are nonbinding opin-ions, more like advice to the per-son asking the question. At least in Egyptwhere Ive done most of my researchwith the advent of mod-ern nation states, theres this ten-sion where the political rulers want

    Sherine Hamdy, PhD, is Kutayba Al-ghanim Professor of Social Science and Assistant Professor of Anthropology at Brown University.

    GeneWatch: Firstly, Islam is obvi-ously a very diverse religion, so is it safe to assume there are equally di-verse ideas about bioethics within Islam? In other words, is there ac-tually such a thing as one Muslim bioethics?

    Sherine Hamdy: Thats an open question. There are two big compet-ing narratives in the Muslim world: One is that Muslims should have their own bioethics, and mostly that would be gleaned from the Muslim jurists who issue fatwas in response to questions that people might ask about a specific medical procedure or technology. But the critique of that is: Why are we just looking at legal scholars? Dont we have this much richer tradition that includes literature and ethics? And just be-cause of the post-colonial structures of many Muslim countries, it turns out that the Islamic legal voices are one of the ones that remain, to the detriment of other traditions. So thats one view, the we have our own bioethics view.

    The other view is one that you get a lot from the lay public: Dont we all have a common morality? Isnt medicine, in essence, univer-salso shouldnt we have a bioethics that has developed in tandem with medicine?

    Muslim Bioethics, Official and UnofficialIn Egypt, a code of bioethics is often handed down if not always adopted by an amalgamation of church and state.intervieW With Sherine hamdy

  • geneWAtch 17VOlume 26 number 4

    God knows that Ive already done so much for my disabled child, or God knows that I might not be able to continue caring for my disabled child if I have another one. So it would play a role in making that decision, in alleviating the guilt.

    Before we go, I have one other re-ally interesting story.

    In Israel, in the Negev region, there are Bedouins who have been displaced by the Israeli nation state, and they live in a lot of poverty. Be-cause of their displacement from the land, theres a smaller gene pool from which to marry, so they had re-ally high rates of some genetic dis-eases. The Israeli medical hospital is the one who sees these patients, and one of the Israeli geneticists said, We should go to that community and screen them, and tell the people who are heterozygous not to marry each other. So they did that, under questionable circumstances. But what happened was when women were told that they carried a defec-tive gene, they were being ostracized and became unmarryable. And the men, for the first time, broke with tradition and married outside the group. Then they would come back and sometimes take those women who were unmarryable before as second or third wives. So it really reduced the status of those women, and it didnt reduce the burden of the disease. And it led to a lot of further distrust between the community and the medical establishment.

    So in summary, its not just what religion people belong to, but also their socio-economic status, the amount of power they have over their lives and their reproduction, their resources, and what their past experiences and understandings of medical intervention have been that factor into ethical decision-making. nnn

    Muslim majority?

    There has been a lot of interest among Muslim minorities in Western coun-tries who are wondering is this sort of procedure OK according to my beliefs? Whereas, in my experience, Ive seen Muslim patients in Muslim majority countries kind of conflating the medical and moral authority of the physician. So they trust that the physician wouldnt offer a procedure that wouldnt be in accordance with their beliefs.

    Another big difference is peoples access to medical technologies. We can see this, for example, with pre-natal genetic screening in the U.S., which has become widely available for pregnant women who are iden-tified as high risk, despite the high cost. In Egypt, usually its only after a person has already had a child with a significant genetic disease that pre-natal genetic screening is offered to the patient.

    Is that because the parents dont think about getting prenatal testing beforehand, or because the doctors dont think about it?

    Both. Part of that is just about re-sources, part of it is about awareness, and about access.

    For example, where an expectant mother has been diagnosed with car-rying a child with a defect or disease, and shes struggling with that deci-sion about whether to terminate the pregnancy or carry on in almost all the cases I saw, those women already had an affected child in the family. The question was can I have another one? It wasnt can I have a life as the mother of a disabled child?

    I think in some cases that influ-enced how they came to think of re-ligious ethics in whether they could terminate the pregnancy, because they would think something like,

    control over the people who are is-suing fatwas, but people will only trust the religious authorities issuing fatwas if they are seen to be sepa-rate from political manipulation. So theres always a tension there.

    What are the implications for some-body who doesnt follow a fatwa?

    It depends. For example, with organ transplantation, which is studied a lot, the legislators in Egypt were de-bating for a long time: Are we go-ing to allow the harvesting of organs from patients who arent really dead, who are in this state between life and death? Wed have to redefine death the way European and American countries did in order to allow for the harvesting of organs. There was a lot of unease with it, and none of the leg-islators wanted to do it because they were uneasy with it, ethically. They got the state appointed muftis to say, No, its OK, because the physicians say its OK, but that wasnt enough to qualm everyones fears.

    Often in bioethics, if the fatwa is saying no to something that the state wants to do, they will encour-age the mufti to change it in line with the states aims. But if the fatwa says yes, that isnt necessarily in itself enough to convince people to follow it. To give another example, with in vitro fertilization, the state-appoint-ed muftis in Egypt said its OK as long as the gametes come from the husband and wife, but there cant be third party donations. So the conse-quence is that doctors dont want to open a clinic in Egypt that will have third party donations. And that is different in different countriesin Iran and Lebanon, for example, the Shia muftis did allow third party donations.

    How is it different for Muslims in the West, in countries that arent

  • August-OctOber 2013 18 geneWAtch

    reflecting our own limited knowl-edge, we refer to Western thought, which is the predominant mode of contemporary science). Modern sci-ence is based centrally on concepts of causation, and the belief that when a particular element (a cause) is present, a specifiable consequence (an effect) must follow. That is, sci-ence is a belief that nature is causally law-like, and works via fundamental, universal, unexceptioned principles. The statement of those principles relevant to any given field of science is known as its theory. But what is a theory?

    Generally, a scientific theory is a series of generalizations that have emerged from empirical examina-tion of the world. The theory usually involves a set of underlying princi-ples, or axioms, that are taken to be underlying universal truths. They are assumed to be true, and in a sense following a view expressed by New-ton in his Principia, each factual ob-servation is a manifestation of those truths. That is, in practice one stud-ies specific, controlled instances, but the conclusions must explain and ac-count for the myriad instances that were not studied. Thus, we observe planetary motion in our solar system, and assume this explains the motions of moons around planets and stars around galaxies everywhere in the universe. In workaday science, axi-oms are assumed to be true and not to be questioned.

    For about 50 years we have also heard the term paradigm referring

    to somewhat similar notions. Though the usage is usually generic rather than specific, and we wont try to discriminate terminological nuanc-es, paradigm typically refers to the working framework by which scien-tists implement their theory. Though very rarely thought about at all criti-cally, paradigm and paradigm shift, terms we owe to Thomas Kuhn, have become fashionable ways to discuss ones own work, subtly implying ones perceptive kinship with New-ton, Darwin and Einstein. This is an understandable aspect of the sociol-ogy of competitive science, in which were pressured for recognition, funding, and other sorts of career re-wards, to ascribe high importance to our work. But our point here is not a sociological criticism.

    The common idea, as expressed by Kuhn, is that we have a paradigm and push the frontier of knowledge as hard as we can to force facts to fit that theoretical framework. When it fails to work, sooner or later some-one comes along with a better frame-work, new assumptions or explana-tions. It is then, for example, that axioms come under question. Kuhns approach, which has been followed up and modified by many scholars since, basically argues for an impor-tant sociological component in the practice of science.

    When research questions are well-posed, the axioms apt and truly uni-versal, the theory works very well. It becomes accepted as expressing universal laws or principles. Physics

    The title of this essay may seem like a very silly question. Of course, ge-netics is not a faith-based belief that an immaterial, universal God is the cause of all things and redeemer of heavenly life-after-death. Geneticists may personally hold such a view, or even that God is responsible for the world that we investigate under the category genetics. But nobody we know believes that genes are them-selves gods, the important point be-ing that the proper science of genet-ics is a purely material investigation of causal factors in the nature of life.

    In many a religion, there is resis-tance to its sacred material being characterized as being metaphori-cally rather than literally true. Literal truths are clear guidelines, but meta-phors have little specific meaning and are, essentially, open to subjective in-terpretation and hence manipulation by parties with various vested inter-ests. In this sense, fundamentalist re-ligions are ideologies, in that they are globally comprehensive, usually rigid beliefs accepted as ultimate truths.

    Is the belief in genes as a deter-mining power in life so widespread that we can call it a religion? That is, not to suggest that people think of genes as gods, but metaphorical-ly, that beliefs about genes have the strict, universal-dogma character-istics of fundamentalist religions. Is that accurate? If so, is it appropriate?

    Science as a way of investigating and understanding the world has taken on various modes of operation in the history of thought (and here,

    Is Genetics a Religion? Maybe not, but it may not be a stretch to say Gene is the new G word.By Kenneth WeiSS and anne BuChanan

  • geneWAtch 19VOlume 26 number 4

    to religion can sensibly be made. Of course the analogy is figurative (ex-cept to the extent that creationists try to explain life in terms of Gods individual local actions).

    Genes are molecules and behave like molecules in all proper chemical and physical ways, as far as is known. Within their proper realm, the mo-

    lecular theory of genetics seems robust in the sense discussed here, even though there are many things we dont know about genes and probably many surprises to come. That doesnt make genes the fundamental units of life, but they certainly do seem to be among those units. The relevant question is the degree to which genes are causally involved in phenomena under study, that is, what are the laws of life and how do genes fit within those laws?

    The problem, if there is one (and we think there is), is the exten-sion of causal axioms from purely molecular to higher-level emergent traits, such as complex morphological or be-havioral organization of organisms. This can lead to what we believe are highly misleading and mistaken arguments of direct causation from

    genomic measures to specific emer-gent outcomes, such as predicting late-onset human disease from an individuals DNA sequence. Often other causal elements are included, like environment, invoked vaguely to account for less than highly accurate prediction, but to salvage the idea

    and characteristics so much above the level of electrons, such as inter-actions among components of huge scale relative to individual electrons, that this compatibility doesnt help much, and we need other sorts of ex-planations (and theories) to explain a building or predict its properties. In this sense, higher-level or emer-

    gent traits must be consistent with lower-level, more fundamental theo-ry, even if not usefully explained by that theory.

    It is when a theoretical explanation is taken to be universally true that it risks becoming dogma, and in that sense something to which an analogy

    and chemistry have many unknown issues, but much that they do seems rather rigorously true in this sense. Atomic theory gives very good un-derstanding of much that chemists do, or of the nature of stars. The the-orys axioms are assumed to be uni-versally, that is cosmically, true, and the evidence seems to support that. In this sense science is a purely ideological view of the world. However, when used in appropriate ways, the theory works, and we usually dont ap-ply the negative nuances of the word ideology to it, nor do we call it even metaphorically a reli-gion. Still, we must ac-cept a couple of impor-tant caveats.

    First, we know from history that theories that were once accepted have been found to be inac-curate or even obsolete when new data or ideas came along. So we must (try to) keep in mind the ephemerality of our as-surances about nature. Secondly, the modern notion of science is high-ly reductionist: The most basic theory is developed to explain the most fun-damental elements of its subject, with the idea that all other facts must in principle be consistent with, and hence account-ed for by reducing them to their fundamentals.

    However, while the properties of the building Im in are consistent with its being built of atoms, and the latter involving electrons, the theory of electrons doesnt help explain the building. The building has properties

  • August-OctOber 2013 20 geneWAtch

    is applying genes far above their proper role of causal units, to highly emergent traits for which individual genes are typically not very usefully explanatory or predictive. Indeed, and somewhat ironically, there is now rather widespread activity, perhaps even a somewhat crude or even cruel riposte to attacks by fundamentalist religions, by scientists determined to show that such religions are them-selves genetic, that is, that religious beliefs in the theological sense are caused by specific genes. Religion is a human trait, and must be compatible with genes and the other molecules of life, but the degree to which it is meaningfully the result of specific genetic causation is a separate ques-tion, which is beyond our scope here.

    A critic may tend to liken much that is in current genetics to being a commitment to religious dogma, say-ing that Gene is just a new G-word (with a capital G) in our culture, and hence genetics as its religion. That is, that the new G-word is basi-cally a substitution that today serves the same sorts of vested material and psychological interests as the old G-word did.

    As we like to put it, genes are in-volved in everything, but not every-thing is genetic. nnn

    Ken Weiss, PhD, is Evan Pugh Professor of Anthropology and Genetics at Penn State University. He writes a regular col-umn on these issues in the journal Evolu-tionary Anthropology. Anne Buchanan, PhD, is a Senior Research Associate in the Anthropology Department at Penn State. Anne and Ken have co-authored two books about genetics and evolution, the most recent of which is The Mermaids Tale (2009), and they blog regularly at a site of the same name.

    that the prediction is valid.Our collective knowledge of these

    topics at present is so rudimentary that the extension of casual assump-tions, almost to their elevation of axioms, risks becoming what could properlyand, yes, negativelybe characterized as ideology and, in ver-nacular terms, as a religion. It can be a belief system that loses the required element of self-criticism and exami-nation. One could argue that if the science is weak, these assumptions will lead to explanatory problems that will force a revision to a new, better paradigm. But this can also be an excuse for continuing expen-sive business as usual, rather than a more fundamental self-examination of the way business is being done. In this sense, the characterization of ge-netics as a religion, while informal is cogent.

    Here we encounter the social and political aspects of science that Kuhn and subsequent sociologists of sci-ence have shown are so important. It must be kept in mind that the ideol-ogy of genes-as-everything reflects history in many positive as well as self-interested ways. Genetics has had a phenomenal success in just a century or so, bringing to light much that is fundamental about life but that was previously wholly unknown. The problem is the extent to which this success has led to genes gaining a metaphoric status, built into an ax-iom of life rather than a component of causation.

    Because of enthusiasm, wishful thinking, interlocked vested inter-ests, cultural momentum, the diffi-culty of thinking more broadly, the desire to be prominent, insightful, right and so on, and to be able to promise everlasting life with inex-haustible food, the attributes of ge-netics have converged on the cultural attributes of a religion. Science today

    From the Council for Responsible Genetics on the 30th Anniversary of GeneWatch magazine:

    Biotechnology in Our LivesWhat Modern Genetics Can Tell You about Assisted Reproduction, Human Behavior, and Personalized Medicine,

    and Much MoreEdited by Sheldon Krimsky and Jeremy Gruber

    For a quarter of a century, the Council for Responsible Genetics has provided a unique historical lens into the modern history, science, ethics, and politics of genetic technologies. Since 1983 the Council has had leading scientists, activists, science writers, and public health advocates researching and reporting on a broad spectrum of issues, including genetically engineered foods, biological weapons, genetic privacy and discrimination, reproductive technologies, and human cloning. Written for the nonscientist, Biotechnology in Our Lives examines how these issues affect us daily whether we realize it or not.

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  • geneWAtch 21VOlume 26 number 4

    Introduction

    Advancements in medical genet-ics have challenged the long-stand-ing relationship between science and religion. Both genetics and religion can affect notions of family and par-enthood, appreciation of diversity and equality, conceptualization of health and disease, and personhood. As noted by Larry R. Churchill: To study the interface of religion and spirituality and genetics is to study the interaction of two powerful in-terpretive schemes for self-under-standing.1 The implications of this convergence on a personal and public level are largely unknown. A Pubmed search of genetics and religion and genetics reveals that approximately 0.01% of publications on genetics ad-dress religion. This is a deficiency in that a majority of U.S. citizens report an affiliation with a faith tradition2 and the use of genetic technology can raise morally licit questions, many

    Religion and Genetics:

    An Inextricable

    Link

    Religion and medical genetics share similar goals, most important of which is promoting the wellbeing of people.By amy mueller and miChael a. Grodin

    with an origin in religious doctrine. As varying and increasing genetic analyses become a more accessible and prevalent part of healthcare, it is important to be sensitive to how reli-gion and genetics interface.

    To test, or not to test

    The 2008 American religious identification survey indicates ap-proximately 80% of the American population surveyed reported a reli-gious self-identification.3 A majority of U.S. citizens report an affiliation with Christianity, but the prevalence of other religions grows as the popu-lation becomes increasingly diverse. As genetics integrates into more ar-eas of medicine, patients and practi-tioners will confront major questions about the appropriate use of genetic technology. Religions are generally pronatalistic, which implies support for the genetic technology that pro-motes childbearing. Some studies

    Images: S. W

    . Anderson

  • August-OctOber 2013 22 geneWAtch

    BRCA1 or BRCA2 genes, religiosity is likely to impact if and how a person finds hope or acceptance. Different contexts, goals, fears, and levels of self-determination inevitably lead to variation in how one copes with new-born genetic screening results versus results for an adult onset genetic condition or cancer. However, the degree to which religious beliefs im-pact a persons interpretation of risk, decisions to get genetic testing, or medical decisions following genetic testing is often unclear and is likely quite personal and individualized.

    Challenges for providers

    How might internal struggles of genetic professionals regarding per-sonal faith and conflicts in their pro-fession affect patient care? Research has demonstrated that genetic coun-selors report lower levels of religi-osity than the general population.7 Cragun, Woltanski, and Myers et al. speculate that this may positively in-fluence regard for patient autonomy and tolerance, but they note that more research is necessary to deter-mine the causation and significance of this difference. Alternatively, low-er levels of religiosity could result in less familiarity with or sensitivity to religious perspectives. If consider-ation of religion is another aspect of cultural competency, professionals in genetics must be aware of how their own religious perspectives may influ-ence interaction with patients.

    Both genetics professionals and religious leaders may feel unprepared to deal with issues in religion and ge-netics.8,9,10 Is it feasible for genetics professionals to address religious is-sues in the clinic? What resources and referrals would be beneficial? The public has indicated that ability to engage health care providers in religious discussion is important.11

    capacities, the health of family mem-bers and ones own mortality. Thus, the psychosocial consequences of genetic testing can be as significant as the medical effects of the genetic condition itself. Additionally, tests cannot always predict severity, on-set or progression of disease be-cause genetic conditions often vary in presentation. When a genetic re-sult presents in the form of a risk, or probability, a person frames the risk using their own experience or values to give it subjective meaning.6 Deci-

    sions can be influenced by personal experience with disease, family dy-namics, and social contexts. Depend-ing on ones religious standpoint, a diagnosis could be seen as a curse, a punishment, or even opportunity to experience meaningful suffering. When confronting a grave genetic diagnosis, such as Huntingtons dis-ease, or a high cancer risk due to an identified deleterious mutation in the

    indicate a negative correlation be-tween attitudes toward genetic test-ing and religious involvement.4 Vir-ginia L. Bartlett, Assistant Director of the Center for Healthcare Ethics at Cedars-Sinai Medical Center writes, Religious affiliation or faith can af-fect whether one sees the use of ge-netic testing as a scientific tool, as an illustration of Gods creation, or as an unwarranted human intervention5

    The decision of whether or not to order genetic testing can be over-whelming because of both the medi-cal and moral implications. Advanc-ing maternal age and greater access to prenatal care has resulted in more women facing decisions about pre-natal genetic testing. How do pa-tients reconcile their medical deci-sions with religious traditions, such as Catholicism, that prohibit pre-natal testing if undertaken with the intention to terminate a pregnancy with a genetic abnormality? Does re-productive genetic technology effect conceptualizations of parenthood and procreation? What are the impli-cations of the use of this technology to various religions that emphasize the importance of kinship and lin-eage? How do religious themes of Creation or Gods will allow for genetics based intervention? Does use of prenatal testing reveal what characteristics we value and who we value? It is expected that when faced with these and other meaningful questions, many people will look to religion for guidance.

    Coping with genetic test results

    The field of human genetics has expanded rapidly and the associa-tion of genetic variants with pheno-typic outcomes in the population has improved the utility of genetic test-ing. The results of a genetic test can have implications for reproductive

    Depending on ones religious

    standpoint, a diagnosis

    could be seen as a curse, a

    punishment, or even opportunity

    to experience meaningful suffering.

  • geneWAtch 23VOlume 26 number 4

    religion influence public and institu-tional policy or regulations on medi-cal genetics and the use of genetic technology? How can religiously informed policy in genetics be bal-anced in a secular, pluralistic society?

    Need for research

    Religion and medical genetics share similar goals, most important of which is promoting the wellbe-ing of people. Consideration of the implications of advances in genetics on all religious paradigms will bet-ter serve patients. Religious assess-ment is a way of opening the doors for dialogue about values that come into play when making decisions regarding genetics. Harold Koenig, co-director of the Center for Spiritu-ality, Theology, and Health at Duke University Medical Center, stated, Neglecting the spiritual dimension is just like ignoring a patients so-cial environment or psychological state, and results in failure to treat the whole person. Awareness of the areas of contention in this relation-ship is the first step toward resolu-tion. Respectful practice and policy will promote more valuable use of genetic technology in medicine. nnn

    Amy Mueller received her MPH from Boston University. Michael Grodin, MD, is Professor of Health Law, Bioethics & Human Rights at the Boston Univer-sity School of Public Health.

    as Rebecca Anderson, attorney and genetic counselor, notes, in a medical setting patients may assume these topics are off limits.12 Significant factors that were found to influence the performance of religious assess-ment were the genetic counselors comfort with and perceived relevance of the religious assessment itself.13 A cleare