GeneWatch Vol. 26 No. 4

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

Volume 26 Number 4 | Aug-Oct 2013

Featuring: 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) ISSN 0740-9737

GeneWatch August-October 2013 Volume 26 Number 4

Editor and Designer: Samuel W. Anderson Editorial Committee: Jeremy Gruber, Sheldon Krimsky, Ruth Hubbard GeneWatch is published by the Council for Responsible Genetics (CRG), a national, nonprofit, taxexempt organization. Founded in 1983, CRG’s 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 directors

Sheldon Krimsky, PhD, Board Chair Tufts University Evan Balaban, PhD McGill University Paul Billings, MD, PhD Life Technologies Corporation Sujatha Byravan, Phd Centre for Development Finance, India Robert DeSalle, Phd American Museum of Natural History Robert Green, MD, MPH Harvard University Jeremy Gruber, JD Council for Responsible Genetics Rayna Rapp, PhD New York University Patricia Williams, JD Columbia University staff

Jeremy Gruber, President and Executive Director Sheila Sinclair, Manager of Operations Samuel Anderson, Editor of GeneWatch Andrew Thibedeau, Senior Fellow Vani Kilakkathi, Fellow Cover Design Samuel W. Anderson Editorial & Creative Consultant Grace Twesigye 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

2 GeneWatch

Editor’s Note

Samuel W. Anderson

This issue focuses on intersections and interactions between religion and genetics. It’s 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 “religion” 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 challenges, 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 it’s particularly true.

A couple of the more specific topics covered in this issue were rather close to home for me. I won’t pretend it’s a coincidence; when Jeremy (Gruber, Executive Director of CRG) and I first discussed doing a religion issue, Christian Creationism and Amish genetics both came quickly to mind. I grew up in Ohio’s 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 nonAmish people comment on the Amish, from CNN to Weird Al Yankovic songs to, worst of all, reality TV). That led to an interview 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 aggressive sort which opposes the basic principles of natural selection, hits especially close to home. I grew up in an area where conservative 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 Christian.” I remember people saying “The Theory of Evolution” the way that many of the same people would later say “Barack Hussein Obama.” My parents had taught me about evolution, so I Continued on page 7

comments and submissions GeneWatch welcomes article submissions, comments and letters to the editor. Please email anderson@gene-watch.org 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 genetics Ruth Hubbard • Jonathan King • Sheldon Krimsky • Philip Bereano Stuart Newman • Claire Nader • Liebe Cavalieri • Barbara Rosenberg Anthony Mazzocchi • Susan Wright • Colin Gracey • Martha Herbert August-October 2013

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 worry—for good reason—that 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 Israel’s Law of Return puts the state in the position of answering a complex question: Who is Jewish and who isn’t? 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 whistleblower’s decade-long struggle against one of the world’s largest corporations. By Becky McClain 39 Endnotes

Volume 26 Number 4

GeneWatch 3

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

No biologist—indeed, no welleducated and thoughtful person— can be in any doubt that human beings 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 “nature” (i.e., evolution by natural selection), but whose precise evolutionary causation is currently obscure.

Among these mysteries of “human nature,” one of the more perplexing—and fraught—is the question of religion.

Of course, it is not guaranteed that human religiosity has evolved at all, in the biological sense. There is considerable variability in religious practices worldwide, which at least opens the possibility that the underlying causation is simply cultural tradition and social learning, which vary from place to place—as does, for example, human language. But even as culture and social learning obviously determine the detail of what particular language is spoken by what particular people, it is also true that all ‘normal’ 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 apply to religion, too. Thus, the simple fact that religion is what anthropologists call a “cross-cultural universal” could suggest that it derives from another, underlying cross-cultural 4 GeneWatch

universal: shared aspects of the human genome.

But what?

The most obvious possibility is a “God gene.” Although such a gene was purportedly discovered more than a decade ago, subsequent research has been unable to confirm this claim. Far more likely is a general, genetically influenced tendency to accept authority, to venerate designated leaders, to be positively influenced by ritual (especially when socially shared), and so forth. Nonetheless, the evolutionary mystery in this case goes beyond the need to locate one or more presumed religion-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 religionpromoting 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 significance of such behavior is easy to imagine. But if the animal regularly interrupts such a clearly adaptive activity to do somersaults, we are legitimately 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 Christians donating 10% of more of their income to their churches, evolutionists cannot help seeing the biological equivalent of truffle-pigs doing cartwheels. In short, it is not biologically satisfying to conclude that religion exists because of a “religion gene”— even in the unlikely event that such a gene or gene complex exists—because 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 examined 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 University Press).

A Viral Meme One possibility is that religion exists and has been promoted despite being maladaptive, or at least because its biological payoff is enjoyed not by those people who participate in various religions, but instead by the unit(s) that are the cultural equivalent of genes; namely, memes.

Whereas genes are entities of nucleic acid that reside in living bodies, memes are entities of memory and August-October 2013

information that reside in society.

Genes are inherited biologically, via reproduction; memes are acquired culturally, via teaching and imitation. Genes are Darwinian, projected across generations via reproduction and spreading by the process of organic evolution; memes are Lamarckian, 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 sufficiently 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 liable to pounce, another hominin inclined to compete or to mate, and so forth. The next step, then, could well Volume 26 Number 4

be a tendency to carry such interpretations farther than any actual situation would necessitate, and therefore seeing “agency” in the world, not only when it is really there but even when it isn’t, especially when potentially directed at ourselves and thus important to us. “We find human 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 sometimes, 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 wielding an array of Hyperactive Agent Detection Devices (HADD), which aren’t devices for the detection of hyperactive agents but rather detection

devices that are themselves hyperactive, readily perceiving “agency” in the universe. This hypothesis, like that of viral memes, is uncongenial to believers since it suggests that although Agency Detection Devices were adaptive (and probably still are), when it comes to religion, they overshoot and as a result, we’ve been HADD. Theory of Mind Related to the Overshoot Hypothesis, but more specific, is one based on what psychologists call Theory of Mind (ToM). Basically, this is a comparatively advanced mental capacity and one that has almost certainly 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 step—and one that perhaps is necessarily connected to ToM— could 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 observant human beings to modify or propitiate them.

GeneWatch 5

The Big Brain Effect Another consequence of having a big brain (which itself presumably evolved for a variety of possible reasons, including efficient communication, planning, tool use, sophisticated mate selection, elaborate child care, etc.) could well have been a felt need to explain things, including some—such as death, questions of “meaning” in life, perplexing weather events, and so forth—that don’t 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 explanations—objectively valid or not—resulting inevitably in religious beliefs.

Closely connected to the Big Brain Effect is the widespread and highly adaptive propensity of people, especially when young, to learn from adults and others in authority. After all, a species with a lot to learn must be predisposed to accept instruction. Thus, regardless of what actually generates religiosity among adults, once present it is likely to be avidly taken up by subsequent generations. 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 overwhelmingly prone to adopting other traditions from their parents, including the latter’s 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 Freud’s suggestion in The Future of an Illusion that religious belief is an “infantile neurosis” in which the 6 GeneWatch

young search for substitutes to their developmentally more primitive (but nonetheless biologically appropriate) perception that their parents are allwise 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 convey a benefit to the group. This hypothesis is especially controversial among evolutionary biologists, since it is widely accepted that natural selection is only effective at the level of individual organisms and their genes, rather than between groups. This is because “altruistic” behavior directed at other group members—unless the recipients are genetic relatives— would be strongly selected against within such groups. Nonetheless, it is at least possible that “group selection” might have been uniquely effective among Homo sapiens, especially when it comes to religion, since human beings are unusual among animals 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: reducing the proportion of freeloaders, enhancing communication among believers, raising confidence in each other’s behavior, and so forth.

God as Alpha Male It is also possible that religious belief—and particularly faith in one or a small number of very powerful

deities—derives from a this-worldly primate tendency to worshipfully obey a dominant leader, who normally provides defense, facilitates access 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 numerous 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, enhanced biological and social success.

A Role for Consciousness?

Another group-related payoff to religiosity might be connected to what appears to be the uniquely human level of individual consciousness. As individuals evolved greater self-awareness (the adaptive value of which constitutes yet another evolutionary mystery, but one for which there are numerous hypotheses), they might well have become increasingly aware of the extent to which their personal, self-oriented inclinations differ from what is optimal for the larger social group. As a result, 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 individuals— however reluctantly—might 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 accruing to a small number of individuals August-October 2013

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

There is a common denominator 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 contributed to the evolution of religious belief and practice, the puzzle of religion’s origin corresponds with another puzzle: the evolution of altruism. 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 evolutionary 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 Roman world were all considered by the people as equally true; by the philosopher, as equally false; and by the magistrate, as equally useful.” 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 “usefulness” of religion extends to natural selection (operating possibly on groups), no less than to Roman magistrates (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 perceived as such by their proponents.

Volume 26 Number 4

On the other hand, religious persuasion 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 coherence—whether objectively justified or not—that 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 proceeded via group selection, which, in turn, might have favored those groups that were more violently cohesive during war and morally cohesive during peace. In my opinion, however, it is highly likely that natural selection, whether acting at the level of individuals or of groups, has been responsible for the existence as well as the perseverance of religion.

Religion poses other genetic puzzles. For example, religious fundamentalists—from a variety of different faiths—consistently oppose birth control, which raises the question of whether there exists a gene-connected susceptibility to fundamentalist beliefs, with natural selection favoring such a propensity. There is no question, in any event, that Homo sapiens presents many as-yet-unsolved evolutionary mysteries, of which religiosity itself—fascinating as it is— represents only one. nnn

Editor’s Note, continued from p. 2

was never under the impression that there was any actual scientific “debate” about the merits of natural selection, even when one of my junior high science teachers openly begrudged that they weren’t allowed to teach Intelligent Design as an “alternative theory.” (See Glenn Branch’s article on page 29 for more on this juicy subject.) But when your pastor rails against the teaching 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 defended natural selection as fact.

This usually came in the form of arguments with Creationist classmates 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, usually 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

David P. Barash, PhD, is a Professor of Psychology at the University of Washington. He has written numerous books on animal behavior, evolutionary psychology, and Peace Studies.

GeneWatch 7

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

Interview

with

Harold Cross

Harold Cross, MD, PhD, began studying genetic disorders in the Amish community of Holmes County, Ohio, in the 1960s and founded the Windows of Hope project 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 disorders are more common, sometimes 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: We’re specifically interested in autosomal recessive disorders. For this sort of disorder, one genetic mutation on one chromosome usually does not cause a disease— you 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 somewhat related to them, or at least come from the same “founder,” as we call

8 GeneWatch

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 mutation and the group continues to intermarry and doesn’t admit many outside 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 autosomal recessive diseases.

From a genetics point of view, or a scientific point of view, this provides an opportunity to look for mechanisms of disease, to help us understand biochemical pathways and the nature of health and disease. That’s 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 faith—say, between an Amish community in Ohio and one in Indiana?

That’s a very good question, and the Amish have actually raised that question as well. But here’s the scenario, in very broad terms: The first Amish that immigrated settled in eastern Pennsylvania in the 18th century. There was another whole wave that came over in the 19th century, and they tended to skip over eastern Pennsylvania and settle more in western Pennsylvania, and from there they settled in Ohio and Indiana, and in many other communities in other states. So it really doesn’t do a whole lot of good, say, for someone in Holmes County (Ohio) to say, “I’m going to go to Indiana to find a wife, someone who’s not related to me,” because they’re probably related as well—the Indiana community came from the same

August-October 2013

people who founded the Ohio community. The eastern Pennsylvania Old Order Amish seem to be genetically 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 doesn’t do much good to move to another community, because you’re just going to find more relatives there!

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

Well, they don’t really. There’s an embedded prohibition against marrying 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 don’t usually check that far back. The information is freely available, there

are good genealogical references, but it doesn’t usually get checked out.

The problem, though, is—OK, let’s say you marry your second cousin.

What happens is that the progenitors of those second cousins themselves are related in some way, and their parents are related, etc. The degree of relatedness is cumulative so couples are more closely related than a simple 3 or 4 generation pedigree would suggest.

So that’s where the founder effect comes in.

That’s 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 meeting up with someone who has the same rare new mutation is pretty small. That’s why most of these recessive 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 maintains that founder’s effect is that not many people convert to become Amish, right?

That’s true, and this is an argument that I like to point out: While groups like the Amish can have a fairly high number

Volume 26 Number 4

of individuals born with autosomal recessive diseases, they’re oftentimes fairly local. For example, one disease that we have worked on, that I found in the 1960s, is only found in Holmes County. We’ve never found an individual 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 don’t have because of this. So it’s also a protective mechanism.

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

As you say, I’ve been doing this for forty-some years, and obviously the end result we’re looking for is a benefit to the communities. But how do you do that? Well, a lot of people are very grateful to know “this is a genetic defect—it wasn’t because I ate the wrong vitamins or vegetables or rode horses too much.” There are psychological benefits that come from knowing why your child is the way that he or she is.

But what you’d really like to do

GeneWatch 9

is reduce the number of individuals born with severe developmental regression or neuro-degenerative diseases. This can be complicated sometimes because of Amish religious teachings. For example, we could do in utero testing, but it doesn’t really matter if you find out that an unborn child has a disease if the parents say, “well, that’s God’s will, that’s the way it’s going to be.”

So that kind of work which is done in the general population really doesn’t work for the Amish. Now, one of the things I’ve observed over the years is that younger generations are much more interested in becoming knowledgeable about some of these things, and they avail themselves of computers. 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 they’re much more informed and more anxious to see what could be done, much more than the older individuals, who tend to say “It’s God’s will, it’s the way it is.” So there’s an opportunity, and it’s something that we’re very interested in exploring, mainly for the education of younger couples who are building their families. If you know—and we can test this in both parents—that they each carry the same mutation and have a 25% chance of having a child with this disease, they can decide whether they want to risk it. So we can do that, we can certainly do premarital and later testing to determine whether each parent carries a gene. It’s not unlike the big push now among Ashkenazi Jews, encouraging young people to come in before they have kids and get anonymously tested. They don’t 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 10 GeneWatch

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

Now, ultimately, I don’t want to change the Amish. It’s not my business, and we shouldn’t interfere with them. But I do think that knowledge is power. We offer free testing to anyone who wants it, and there are some parents who say they want their children tested. Now, what you do with that information is another thing—it doesn’t do much good to get tested and find out you have a mutation if you don’t also test your partner or prospective partner.

I’m speaking frankly with you here—we’re not necessarily promoting any of this—but if we can make information available about transmission of diseases and basic genetics, then hopefully the population will use that to their benefit. But that’s a slow going process.

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

We have had meetings with some bishops and community leaders and raised that question: Would people accept this, do they think it’s an acceptable thing to do, or is it against their Ordnung. And it’s really interesting—I thought there would be a more uniform opinion, but there really isn’t. One bishop says, “I leave it up to the families,” and another says, “I’m not sure we want to do that, I’m concerned about what it might lead to.” So there isn’t 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 information is out there, what tests can be done, and obviously it’s up their own

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, they’re essentially self-insured, they have their own funds they use to help families out, and they’re very aware of the burden of genetic diseases on the community and the cost of it. We often get families who find out about what we’re doing and ask if we can come do testing for them.

Here is the best example: We discovered, about 7 or 8 years ago, a new mutation that causes hypertrophic cardiomyopathy, a heart condition which can cause sudden death at any age. We found the mutation that causes it, and we began testing for that. In adults, that’s a dominant disease, so it’s passed along with 50% probability to every child that you have. We’ve been at this for a few years, trying to identify individuals who carry the mutation, because they’re at risk of sudden death.

And this has real health benefits—if caught in time, treatment can save your life. Well, it didn’t take long until we had people coming out of the woodwork asking to be tested. People 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 we’ve been working in this community for years—we make a couple trips there every year, and we have some people working there full time—we’re getting invited to reunions and special occasions because people want to meet us. nnn

August-October 2013

Tell Me a Story: Genomics vs. Indigenous Origin Narratives Indigenous critics worry—for good reason—that 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 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 Genographic, and the Human Genome Diversity Project before it, as the contemporary continuation of colonial, extractive research. The analysis is also a fundamental historical examination of Western science.

IPCB foregrounds the intellectual and institutional authority that science, a powerful tool of colonizing states, has to appropriate indigenous

bodies—both dead and living—material cultural artifacts, and indigenous cultural narratives in the service of academic knowledge production.

Critics point out that such knowledge rarely serves indigenous peoples’ 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 today’s anthropological and biological research on Native Americans. Throughout the 20th century, indigenous peoples around the world witnessed the too common practice of “helicopter research”—quick sampling without return of results or benefit to subjects. Indigenous DNA

samples and data taken in earlier decades when ethics standards were lax continue to be used and cited in contemporary investigations, bringing those injustices into the 21st century.

And new, more ethical research still takes time from other pressing projects and needs. Informed community 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 subjects—as simply the raw materials for science.

Indigenous critics also describe abstract risks that eventually contribute to legal and material harm. They worry about the objectifying nature detail from Dakota Sioux Winter Count, 1890/1900

V11 olume Gene26 Watch Number 4

AugustG -Oene ctober Watch 2013 11

of human genome diversity research in which indigenous and other “isolated” peoples are used to represent ancient, less admixed populations— as therefore less evolved and not active 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 humans, the impending death of the Indian unable to cope with modernity, and a divinely sanctioned Westward expansion, continues to insidiously inhabit modern genomics. And they should be worried. Influential Western narratives about indigenous cultural stasis and notions of purity still plague the non-genomic sciences, including social and policy sciences and the humanities, with great impact on indigenous lives. Physical and cultural anthropologists, legal experts, and historians are called upon by the scientific state to adjudicate indigenous claims to rights or resources, e.g. to determine if a group constitutes an authentic tribe worthy of recognition, 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 ancestors are desecrated in the name of scientific discovery,” or “Our creation stories and languages carry information about our genealogy and ancestors. We don’t need genetic testing to tell us where we come from,”3 they are not simply expressing “religious” or “cultural” concerns. To characterize them as simply anti-science, or as religious zealots not only misses their sophisticated historical analyses and 12 GeneWatch

political insights, but misunderstands 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 “creation science” of some Christians, indigenous critics call out scientists and the church alike for their missionary tactics and their distortion of indig-

Being allergic to the recognition of power relations in the scientific enterprise no doubt impedes one’s ability to truly grasp indigenous analyses. enous knowledge. Indigenous critics note that Western cultural and historical 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 Darwin’s Origin of Species, were intimately entangled. Today, they are not as disentangled as their respective practitioners would believe. Both science and the church

claim the right to tell the only true story of human history. While the empirical data informing the two respective approaches differs, they are both laden with longstanding narratives of indigenous isolation, unenlightened 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 calling for a boycott of the Genographic Project, a lively genetic genealogy listerv (genealogists who use genetics to fill in the gaps in their family trees) erupted in defense of Genographic and human genome diversity research. Populated overwhelmingly by self-identified European-Americans, recent ancestry in Europe is the most popular topic of conversation on this particular list. Native American ancestry is the second most popular.4 (Unlike the law of hypodescent in which someone with any African Ancestry should be categorized as black and not white, U.S. race politics have historically sanctioned the absorption of “red” into the white body.) Many of the genetic genealogists online that day have a deep understanding of genetic science but could not grasp the basics of IPCB’s incisive political critique. Indigenous critics do not simply object to human genome diversity and migrations research that contradicts indigenous creation narratives, but condemn the power that science has had to define indigenous peoples’ histories, identities, 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 testing for pretty much the same reasons that some people fear genealogical DNA testing. They are comfortable with their myths & not particularly

August-October 2013

interested in investigating anything that might shake their worldview.

Clinging to tradition is not something 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 proven 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 genome knowledge are often seen to fall on the same side of a “religion versus science” divide. However, unlike Christianity, Native American 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 practice their ceremonies without having them outlawed or losing access to sacred sites through land and resource grabs. So why the resistance? Certainly, 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 Volume 26 Number 4

good of neutral science, that nature and culture are opposed. One cannot be a rigorous scientific thinker and indulge in “politics.” Of course, indigenous critics call attention to the politics that always already inhabit science. But being allergic to the recognition of power relations in the scientific enterprise no doubt impedes one’s ability to truly grasp indigenous analyses.

In addition to a politics allergy, scientific thinkers read indigenous creation narratives in an overly simplistic manner when they reject for example accounts of a people emerging from a cave, or a hole in the ground. They miss central propositions in such narratives that reveal how indigenous peoples understand the world and their place in it. For example, indigenous creation narratives provide values for living, narrate our common history, cohere us as Peoples (and not simply “human beings”) with a common moral framework. They tie us to sacred landbases. Indigenous peoples understand 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 ancestry evidenced in “populations.”

They involve biological, cultural, and political groupings constituted in dynamic long-standing relationships with living landscapes and waterscapes that define our peoplespecific identities. This is an important difference between the way that indigenous peoples wield the idea of “origins” and the way that human genome diversity does. In the latter case, landscapes or waterscapes are places through which humans and their molecules move and settle.

An environment/human divide is

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 challenge genomic narratives, but when read in all of their complexity one can see the veracity present in indigenous creation narratives and the debatable conceptual and material presuppositions of genomic narratives. Indigenous groups are not antiexperimentation or technology, nor reject all new knowledge emerging from sciences, but often want to integrate that knowledge within their world views.

Indigenous peoples do not expect scientists to adopt their stories of origin. Theirs are not generally proselytizing traditions. But they—we— want 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 genome 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 resources, and sometimes even their cultural narratives, and by de-valuing the truths and powerful values of those it seeks to include and connect. nnn Kim TallBear, PhD, is Associate Professor of Anthropology at the University of Texas at Austin. She is the author of Native American DNA: Tribal Belonging and the False Promise of Genetic Science (University of Minnesota Press, 2013).

GeneWatch 13

Delicate Decisions Assisted reproductive technologies raise complicated questions for Christians —about faith, about suffering, and about compassion.

By Ellen Painter Dollar During her third summer of life, my oldest daughter had three broken bones—a broken arm in June, a broken tibia in July, and a broken femur in August. The thing we had most feared since Leah’s birth was now happening. I was simultaneously 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 musculoskeletal 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 fractures, although she had gross motor delays related to muscle weakness.

On her second birthday, she broke her tibia while climbing on a childsized couch, purchased to give her a safer alternative to climbing on the regular couch. I could not make up a better introduction to the capricious nature of the disorder we live with. Then, when she was two-anda-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 contemplating 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 particular mutation. We could test for my and Leah’s OI mutation, only select fertilized eggs that did not have the mutation, and thus guarantee a 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 summer. 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 Verlinsky, labeled the technology a type of primary preventive medicine. For me, mired in caring for a fragile child spending her summer encased in various pink fiberglass casts, considering PGD as a straightforward means to rid my family of a painful malady was both appealing and practical.

And yet I was haunted that summer, 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 Christian faith, than I did over the taxing logistics of an IVF/PGD cycle. And I found that few people in my Christian 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 Roman Catholic Church stands alone as having addressed the ethics of reproductive technologies—from contraception and artificial insemination to PGD and surrogacy—in depth. As I wrestled with our decisions around PGD, I corresponded with a good friend who is a Roman Catholic theologian 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 literally creating new life. Anything that interferes with or engineers this divinely given privilege is problematic.

There is much more to Catholic reproductive ethics than that of course, including concerns over introducing third parties into the marriage contract (through gamete donation and surrogacy, for example), commodifying children (transforming them from gifts of God received with open arms to products manufactured by fertility clinics to meet parental standards), and manipulating or destroying human embryos.

While many of my Catholic friend’s arguments (which were offered with an assurance that he would honor whatever decision we made) were appealing, my practical nature kept interfering. It’s 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 pressing practical concerns (such as money) and/or an utterly human desire to spare one’s children from suffering, rather than parental wishes to order up a certain kind of baby when and how they want.

Also, I’m not Roman Catholic. I August-October 2013

am a lifelong Episcopalian who took a detour of about a decade into evangelical and nontraditional progressive churches. As I discovered while contemplating PGD, Protestant reproductive ethics are practically nonexistent, 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 layperson 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 people’s 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 comment boards), many Protestants tend to focus overly on abortion, trying to transfer their pro-life or pro-choice views directly to other reproductive concerns. Decades of divisive, oversimplified debate around abortion have left Christians ill-equipped to engage in effective discourse and empathetic counsel around reproductive technologies such as IVF, prenatal testing, and PGD. They often 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 hurting and my head reeling with questions 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 suffering associated with OI? What about the core Christian idea that suffering (e.g., Christ’s death on the cross) Volume 26 Number 4

can be redemptive (bring about healing and wholeness)? I had questions around money and medicine: What values were driving my fertility clinic’s desire for our IVF/PGD cycle to succeed? How did their values compare with ours? And then there were a host of questions around the nature of OI and, more broadly, disability itself: 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 preventing)? Or is it primarily an identity— a manifestation of human diversity that ought to be valued and accommodated, 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 answers were elusive. The day before Leah got the cast for her femur fracture 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 questions 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 experience living with OI and raising a beloved child with OI, tells me that suffering can indeed be redemptive. My faith teaches that light can overcome darkness, that life is stronger than death. Hard, painful things can lead to greater wisdom, more abundant compassion, and stronger

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 strenuous 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 child’s 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 oldest 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 didn’t want to help us, but because they couldn’t. They didn’t know how.

I tell my story to raise questions and nurture conversation around the technologies that offer us the potential—a potential both promising and troubling—to bear children free of genetic disorders. I do not share my story in order to tell people the right answers to these hard questions, because I don’t know what the right answers are. I do not know whether the choices we made were good or bad, right or wrong. We have the children we have—all 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, Parenthood, and Faith in an Age of Advanced Reproduction. She blogs about faith, disability, parenting, and ethics for Patheos, a web portal dedicated to religion and spirituality.

GeneWatch 15

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

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

GeneWatch: Firstly, Islam is obviously a very diverse religion, so is it safe to assume there are equally diverse ideas about bioethics within Islam? In other words, is there actually such a thing as one “Muslim bioethics?”

Sherine Hamdy: That’s an open question. There are two big competing 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? Don’t we have this much richer tradition that includes literature and ethics?” And just because 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 that’s one view, the “we have our own bioethics” view.

The other view is one that you get a lot from the lay public: “Don’t we all have a common morality?

Isn’t medicine, in essence, universal—so shouldn’t we have a bioethics that has developed in tandem with medicine?”

16 GeneWatch

I think sometimes people trying to come up with this thing called “Muslim 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 doctors dealt with different ethical questions. But for the most part, I think it’s inheriting a lot of secular bioethics 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 ethical questions.

You’ve written on the idea of fatalism 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, Islam—not just Islam, other cultures too, but there’s 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 God’s will. One of the big conundrums of Islamic theology lies in the question of that area between God’s will and human agency.

My critique of framing Muslim responses to bioethics in terms of these longstanding theological questions about human’s free will vs. God’s omnipotence is that sometimes we are misrecognizing questions about inequality as fatalism. You might find even Muslim majority countries internalizing that view: That Muslim people are fatalistic, and that’s why they won’t come in for their follow-up treatment, or that’s why they don’t take the necessary precautions. What they’re not looking at is whether people have access to trustworthy 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 opinions, more like advice to the person asking the question. At least in Egypt—where I’ve done most of my research—with the advent of modern nation states, there’s this tension where the political rulers want August-October 2013

control over the people who are issuing fatwas, but people will only trust the religious authorities issuing fatwas if they are seen to be separate from political manipulation. So there’s always a tension there.

What are the implications for somebody who doesn’t follow a fatwa?

It depends. For example, with organ transplantation, which is studied a lot, the legislators in Egypt were debating for a long time: “Are we going to allow the harvesting of organs from patients who aren’t really dead, who are in this state between life and death? We’d 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 legislators wanted to do it because they were uneasy with it, ethically. They got the state appointed muftis to say, “No, it’s OK, because the physicians say it’s OK,” but that wasn’t enough to qualm everyone’s fears.

Often in bioethics, if the fatwa is saying “no” to something that the state wants to do, they will encourage the mufti to change it in line with the state’s aims. But if the fatwa says “yes,” that isn’t necessarily in itself enough to convince people to follow it. To give another example, with in vitro fertilization, the state-appointed muftis in Egypt said it’s OK as long as the gametes come from the husband and wife, but there can’t be third party donations. So the consequence is that doctors don’t want to open a clinic in Egypt that will have third party donations. And that is different in different countries—in Iran and Lebanon, for example, the Shi’a muftis did allow third party donations.

How is it different for Muslims in the West, in countries that aren’t Volume 26 Number 4

Muslim majority?

There has been a lot of interest among Muslim minorities in Western countries who are wondering “is this sort of procedure OK according to my beliefs?” Whereas, in my experience, I’ve seen Muslim patients in Muslim majority countries kind of conflating the medical and moral authority of the physician. So they trust that the physician wouldn’t offer a procedure that wouldn’t be in accordance with their beliefs.

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

Is that because the parents don’t think about getting prenatal testing beforehand, or because the doctors don’t think about it?

Both. Part of that is just about resources, part of it is about awareness, and about access.

For example, where an expectant mother has been diagnosed with carrying a child with a defect or disease, and she’s struggling with that decision 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 wasn’t “can I have a life as the mother of a disabled child?”

I think in some cases that influenced how they came to think of religious ethics in whether they could terminate the pregnancy, because they would think something like,

“God knows that I’ve 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 really 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. Because of their displacement from the land, there’s a smaller gene pool from which to marry, so they had really high rates of some genetic diseases. 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 defective 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 didn’t 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, it’s 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 GeneWatch 17

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

The title of this essay may seem like a very silly question. Of course, genetics 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 themselves gods, the important point being that the proper science of genetics is a purely material investigation of causal factors in the nature of life.

In many a religion, there is resistance to its sacred material being characterized as being metaphorically rather than literally true. Literal truths are clear guidelines, but metaphors have little specific meaning and are, essentially, open to subjective interpretation and hence manipulation by parties with various vested interests. In this sense, fundamentalist religions are ideologies, in that they are globally comprehensive, usually rigid beliefs accepted as ultimate truths.

Is the belief in genes as a determining 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 metaphorically, that beliefs about genes have the strict, universal-dogma characteristics 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, 18 GeneWatch

reflecting our own limited knowledge, we refer to Western thought, which is the predominant mode of contemporary science). Modern science 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, science 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 examination of the world. The theory usually involves a set of underlying principles, 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 Newton in his Principia, each factual observation is a manifestation of those truths. That is, in practice one studies specific, controlled instances, but the conclusions must explain and account 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, axioms 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 won’t try to discriminate terminological nuances, ‘paradigm’ typically refers to the working framework by which scientists implement their theory. Though very rarely thought about at all critically, ‘paradigm’ and ‘paradigm shift,’ terms we owe to Thomas Kuhn, have become fashionable ways to discuss one’s own work, subtly implying one’s perceptive kinship with Newton, Darwin and Einstein. This is an understandable aspect of the sociology of competitive science, in which we’re pressured for recognition, funding, and other sorts of career rewards, 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 someone comes along with a better framework, new assumptions or explanations. It is then, for example, that axioms come under question. Kuhn’s approach, which has been followed up and modified by many scholars since, basically argues for an important sociological component in the practice of science.

When research questions are wellposed, the axioms apt and truly universal, the theory works very well.

It becomes accepted as expressing universal laws or principles. Physics August-October 2013

and chemistry have many unknown issues, but much that they do seems rather rigorously true in this sense.

Atomic theory gives very good understanding of much that chemists do, or of the nature of stars. The theory’s axioms are assumed to be universally, 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 don’t apply the negative nuances of the word ‘ideology’ to it, nor do we call it even metaphorically a ‘religion.’ Still, we must accept a couple of important caveats.

First, we know from history that theories that were once accepted have been found to be inaccurate or even obsolete when new data or ideas came along. So we must (try to) keep in mind the ephemerality of our assurances about nature.

Secondly, the modern notion of science is highly reductionist: The most basic theory is developed to explain the most fundamental elements of its subject, with the idea that all other facts must in principle be consistent with, and hence accounted for by reducing them to their fundamentals.

However, while the properties of the building I’m in are consistent with its being built of atoms, and the latter involving electrons, the theory of electrons doesn’t help explain the building. The building has properties Volume 26 Number 4

and characteristics so much ‘above’ the level of electrons, such as interactions among components of huge scale relative to individual electrons, that this compatibility doesn’t help much, and we need other sorts of explanations (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 theory, 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

to religion can sensibly be made. Of course the analogy is figurative (except to the extent that creationists try to explain life in terms of God’s 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 molecular theory of genetics seems robust in the sense discussed here, even though there are many things we don’t know about genes and probably many surprises to come.

That doesn’t 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 extension of causal axioms from purely molecular to higher-level emergent traits, such as complex morphological or behavioral organization of organisms. This can lead to what we believe are highly misleading and mistaken arguments of direct causation from genomic measures to specific emergent outcomes, such as predicting late-onset human disease from an individual’s 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 GeneWatch 19

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

Biotechnology in Our Lives What Modern Genetics Can Tell You about Assisted Reproduction, Human Behavior, and Personalized Medicine, and Much More

Edited 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.

AVAILABLE NOW from Skyhorse Press

20 GeneWatch

that the prediction is valid.

Our collective knowledge of these topics at present is so rudimentary that the extension of casual assumptions, almost to their elevation of axioms, risks becoming what could properly—and, yes, negatively—be characterized as ideology and, in vernacular terms, as a ‘religion.’ It can be a belief system that loses the required element of self-criticism and examination. 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 expensive business as usual, rather than a more fundamental self-examination of the way business is being done. In this sense, the characterization of genetics as a religion, while informal is cogent.

Here we encounter the social and political aspects of science that Kuhn and subsequent sociologists of science have shown are so important. It must be kept in mind that the ideology 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 axiom of life rather than a component of causation.

Because of enthusiasm, wishful thinking, interlocked vested interests, cultural momentum, the difficulty of thinking more broadly, the desire to be prominent, insightful, ‘right’ and so on, and to be able to promise everlasting life with inexhaustible food, the attributes of genetics have converged on the cultural attributes of a religion. Science today

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 themselves 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 question, 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, saying 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 basically a substitution that today serves the same sorts of vested material and psychological interests as the old Gword did.

As we like to put it, genes are involved in everything, but not everything is ‘genetic.’ nnn Ken Weiss, PhD, is Evan Pugh Professor of Anthropology and Genetics at Penn State University. He writes a regular column on these issues in the journal Evolutionary 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 Mermaid’s Tale (2009), and they blog regularly at a site of the same name.

August-October 2013

Religion and Genetics: An Inextricable Link

Introduction

Volume 26 Number 4

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 religion and genetics interface.

To test, or not to test The 2008 American religious identification survey indicates approximately 80% of the American population surveyed reported a religious self-identification.3 A majority of U.S. citizens report an affiliation with Christianity, but the prevalence of other religions grows as the population becomes increasingly diverse.

As genetics integrates into more areas of medicine, patients and practitioners will confront major questions about the appropriate use of genetic technology. Religions are generally pronatalistic, which implies support for the genetic technology that promotes childbearing. Some studies GeneWatch 21

Images: S. W. Anderson

Advancements in medical genetics have challenged the long-standing relationship between science and religion. Both genetics and religion can affect notions of family and parenthood, 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 interpretive schemes for self-understanding.”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 address 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 medical genetics share similar goals, most important of which is promoting the wellbeing of people.

indicate a negative correlation between attitudes toward genetic testing and religious involvement.4 Virginia L. Bartlett, Assistant Director of the Center for Healthcare Ethics at Cedars-Sinai Medical Center writes, “Religious affiliation or faith can affect whether one sees the use of genetic testing as a scientific tool, as an illustration of God’s creation, or as an unwarranted human intervention…”5 The decision of whether or not to order genetic testing can be overwhelming because of both the medical and moral implications. Advancing maternal age and greater access to prenatal care has resulted in more women facing decisions about prenatal genetic testing. How do patients reconcile their medical decisions with religious traditions, such as Catholicism, that prohibit prenatal testing if undertaken with the intention to terminate a pregnancy with a genetic abnormality? Does reproductive genetic technology effect conceptualizations of parenthood and procreation? What are the implications of the use of this technology to various religions that emphasize the importance of kinship and lineage? How do religious themes of “Creation” or “God’s 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 association of genetic variants with phenotypic outcomes in the population has improved the utility of genetic testing. The results of a genetic test can have implications for reproductive 22 GeneWatch

capacities, the health of family members and one’s 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, onset or progression of disease because genetic conditions often vary in presentation. When a genetic result 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-

Depending on one’s religious standpoint, a diagnosis could be seen as a curse, a punishment, or even opportunity to experience meaningful suffering. sions can be influenced by personal experience with disease, family dynamics, and social contexts. Depending on one’s 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 Huntington’s disease, or a high cancer risk due to an identified deleterious mutation in the

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 newborn genetic screening results versus results for an adult onset genetic condition or cancer. However, the degree to which religious beliefs impact a person’s 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 personal faith and conflicts in their profession affect patient care? Research has demonstrated that genetic counselors report lower levels of religiosity than the general population.7 Cragun, Woltanski, and Myers et al. speculate that this may positively influence regard for patient autonomy and tolerance, but they note that more research is necessary to determine the causation and significance of this difference. Alternatively, lower levels of religiosity could result in less familiarity with or sensitivity to religious perspectives. If consideration of religion is another aspect of cultural competency, professionals in genetics must be aware of how their own religious perspectives may influence interaction with patients.

Both genetics professionals and religious leaders may feel unprepared to deal with issues in religion and genetics.8,9,10 Is it feasible for genetics professionals to address religious issues 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 August-October 2013

The development of a religious assessment tool that is geared toward medical genetics could be advantageous. For example, we have developed a mnemonic device that guides genetics professionals through religious assessment in prenatal genetic counseling: V – What is the value of prenatal testing to you?

Could this genetic test affect your pregnancy decisions?

How do you ascribe value to the conditions for which you could test?

How would you ascribe meaning to a positive result or a negative result?

A – Advise me about your religious beliefs or affiliations.

Do you consider yourself to be religious?

Is religion a source of support in your life?

L – Do you see a link between your religious beliefs or doctrines and this situation or decision?

Does this association influence your ideas about genetic disease or genetic testing?

U – Do you feel any uncertainty?

If so, what is the source of the uncertainty?

E – If needed, how would you like to extend this conversation?

Could I make a referral to a spiritual leader?

Could I make a referral to a support group or parent of a child with the genetic condition?

When would be a good time to talk again?

S – Summarize the issues, decisions and plan of action.

This template would need to be piloted to determine efficacy. Inviting this discussion is important because, Volume 26 Number 4

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 assessment were the genetic counselor’s comfort with and perceived relevance of the religious assessment itself.13 A clearer understanding of what to address, when and why would improve the ability of professionals to navigate this sensitive area.

Policy and Politics Topics in the realm of family and procreation are effective rallying points in politics and often find a basis in religious doctrine. Hudson, Scott, and Kalfoglou, editors for The Genetics and Public Policy Center, an organization committed to providing unbiased information about genetic technologies, surveyed 1,211 respondents from the general public about reproductive genetic technology (in-vitro fertilization, pre-implantation diagnosis, prenatal testing, or genetic engineering to avoid disease) and preferences about government regulation in 2004.14 The authors found: “Fifty-four percent think about these technologies primarily in terms of health and safety while 33 percent view them in religious or moral terms.” As to be expected, people who conceptualize these issues in the realm of health and safety view genetic technology more favorably than those who think about it in a religious or moral context. Political affiliation was associated with the classification of genetic technologies as health and safety or moral and religiously orientated, with Democrats and Independents favoring the former. However, support for government regulation of genetic testing was politically bipartisan. How will

religion influence public and institutional policy or regulations on medical genetics and the use of genetic technology? How can religiously informed policy in genetics be balanced in a secular, pluralistic society?

Need for research Religion and medical genetics share similar goals, most important of which is promoting the wellbeing of people. Consideration of the implications of advances in genetics on all religious paradigms will better serve patients. Religious assessment 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 Spirituality, Theology, and Health at Duke University Medical Center, stated, “Neglecting the spiritual dimension is just like ignoring a patient’s social environment or psychological state, and results in failure to treat the whole person.” Awareness of the areas of contention in this relationship is the first step toward resolution. 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 University School of Public Health.

GeneWatch 23

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

In a recent issue of Pediatrics, a girl, diagnosed prenatally with trisomy 18 and complex cardiac defects, raised ethical concerns for providers and parents about how to best care for her. The parents asked that all treatment offerings exclude considerations of the child’s genetic profile:

needed for shared inferences.2 But true incommensurability is rare. My purpose is to show how shared decision making can engage stakeholders

As parents, our challenge was to uphold our firm conviction that decisions regarding life and death are the sole province of our Maker while at the same time respecting the feelings and consciences of those who would be caring for our daughter (and loving those care providers as well).

We believe that the knowledge and skills of the medical staff are a gift of God, and should be used in the furtherance of life, not in its destruction.1

The obstetric, genetics, fetal medicine and cardiac teams had different professional opinions about the appropriate medical options. Undoubtedly, some of the health care providers did not share the religious beliefs of the parents.

The commitments of these stakeholders generate real differences that can be attributed to the practices of clinical genetics and religion.

How are differences that emerge from these activities resolved? Some would argue that scientific and religious worldviews are incommensurable, lacking the common resources 24 GeneWatch

with religious and genetic commitments in a process of navigation and negotiation that helps decide what to do.

As a healthcare ethics consultant, I seek to support shared decision making in a variety of clinical settings. Arriving at shared decisions in health care is difficult work requiring skill and effort to manage different perspectives. This process is especially challenging when clinicians’ technical expertise is hard to grasp

and when patients or their family have complex psychosocial situations that clinicians do not understand or endorse. Clinical situations always bring particular configurations of concern that must be addressed; however, cultural attitudes and habits related to genetic and religious practices can create distinctive barriers to a deliberative process. Naming and understanding these social patterns can help overcome the collective anxiety they often produce.

Richard Rorty once called religion a “conversation stopper.”3 When people realize a divergence in religious practice, whether at a dinner party or in an examination room, they often will start talking about something else. The norm is to halt religious lines of conversation at the first sight of difference. In the U.S. context, curiosity about religious/spiritual differences is stifled for a multitude of reasons, many of which can be traced back to political guarantees of religious liberty underwritten by religion’s restricted role in the public square. When patients/ families raise religious concerns during ethics consultations, I observe clinicians reluctant to ask questions about how the patient/family’s religious practices apply to this medical situation. When I ask providers August-October 2013

about their hesitation, a common response is that they want to keep a clean boundary between their medical authority and the autonomy of the patient/family’s religious practice.

Below I propose that shared decision making requires navigating and negotiating between perspectives while being respectful of boundaries.

A person’s genetic inheritance is deeply personal, inescapably political, and for some, indelibly religious.

Genetics, both in scientific discourse and healthcare practice, is strongly associated with personal identity and discrimination.

For better or worse, our cultural network (e.g. science, politics, and religion) has sent and reinforced a powerful message: “My DNA is a unique blueprint for my life. It plays a central role in my being.”

These messages about genetic identity are inextricably tied to historical lessons about eugenics. We must all be vigilant against the temptation to draw lines rashly between acceptable and unacceptable genotypes. Such discrimination in the name of genetic “advancement” usurps, according to some, a supra-human authority.4 And geneticists have fed religious concerns by appropriating religious language to describe the centrality and universality of their findings. In the 1960s, Robert Sinsheimer referred to the genetic code as the “Book of Life”5 and, in 1996, James Watson famously asked, “If we don’t play god, who will?”6 These bold claims have inadvertently reinforced both the religious meaning and religious Volume 26 Number 4

suspicion of genetics.

Let’s look at how these cultural norms might intersect in the situation described in the opening paragraph. Imagine listening in on the first care conference about the girl with trisomy 18. The parents are using the word “baby” and the clinicians are describing her as a “fetus.” These distinct references do not stop the conversation; to the contrary, communication skills have been honed to gloss over such terminological differences. Nonetheless, the word variation marks a potentially important

divide. For these parents, the meaning of “baby” might be linked to an unqualified religious commitment to sustain human life at all costs, whereas for the providers, “fetus,” depending on gestational age, is connected to the medically reasonable option of terminating a pregnancy. Potential sources of conflict remain implicit in these terms. When the parents first heard, “trisomy 18,” they likely were presented with an accurate description of the syndrome’s negative health effects including its high mortality rate and limited treatment

options. These parents expressed a responsibility to profess their faith in the child’s Creator and to urge providers not to discriminate based on chromosome count. Every stakeholder in this situation presumably wants to act in ways that benefit this child/fetus but the rules for defining benefit appear to be very different.

I offer three observations about shared decision making that demonstrate how shared decisions do not require sharing a religion but allow for religion to be genuinely engaged.

1.

Shared decision making depends on the quality of the therapeutic relationship.

Relationships in healthcare are the conduits through which all care is provided. Whether the clinical information is strong or weak, the treatment options clear or ambiguous, the deliberation takes place within an interpersonal space where the quality of the engagement either supports or undermines the trust and respect needed to make health care decisions. A successful shared decision making relationship does not embody respect through a simple equality that presumes to distribute authority evenly. Instead, shared decision making should seek what Michael Walzer has called “complex equality,” where authority is distributed based on a person’s ability to take responsibility in a particular sphere of activity, e.g. parenting and surgery.7 Assessment of a treatment’s benefit can be complex precisely GeneWatch 25

because clinicians and parents/patients are both entitled to have opinions about treatment benefits and burdens in relation to qualities of life.

I often say to clinicians that benefit is a negotiated status and sometime parties cannot agree to the terms. If the relationship has the capacity to hold such differences, then disagreements can occur in a space of compassion that informs decisions about whether cooperation is possible.

2. The goal of shared decision making is to reach agreement about what to do in the situation.

This seemingly simple target is remarkable for what it does not seek to achieve. Mutual understanding complete with common principles or beliefs is not required to share a plan of action. The parents in the case above cannot fully understand the situation from the medical perspective, nor can the healthcare team comprehend it fully from the parent’s perspective.

Every stakeholder, however, should make a good faith effort to share their perspective and to learn about others’ perspectives for the sake of resolving the situation that brings their interests and concerns together. Aligning perspectives completely is an impossible goal but aligning stakeholder commitments around realistic options is often achievable.

3. The primary task in shared decision making is to navigate and negotiate perspectives in ways that help achieve the goal of deciding what to do.

Robert Brandom is skeptical that we can fully share concepts even in our simplest communication efforts, but he observes that “what is shared [in linguistic practice] is a capacity to navigate and traverse differences in points of view, to specify contents from different points of view.”8 As the 26 GeneWatch

parents and healthcare teams deliberate about what to do, they speak and listen in effort to share their perspectives. Navigation begins with offering information and substituting words that allow the respective stakeholders to specify the set of concerns from their point of view. Think about the health care team (fetus, patient) and the parents (baby, daughter) substituting one term for another when referring to the same ultrasound image. The healthcare teams identified three significant medical risks when considering treatment options for this patient: “1) a ductal dependent cardiac defect that would require at least three surgeries for palliation 2) intrauterine growth restriction 3) the chromosomal abnormality.”9 The parents specified “that a diagnosis of trisomy 18, or any other genetic defect, should not be immediately classified as fatal.”10 And the negotiation begins.

Negotiating perspectives takes place when stakeholders identify and respond to commitments that are in tension or incompatible. The parents requested that the health care teams exclude trisomy 18 as a factor in selecting treatment offerings. But what does this request mean? The parents continue, “Each case should be considered individually for the medical challenges it represents, and if intervention can result in the extension of life, all medically indicated treatment options should be offered, with final decisions left to the families involved.”11 On this view, the extension of life without qualification is a proportionate benefit to any burden or harm this child may undergo in treatment. The parents have a religious obligation to endorse any action that will extend human life. The healthcare providers have a professional obligation to avoid harming patients and to act only with a reasonable

likelihood of proportionate benefits.

And the natural history of trisomy 18 must be factored into calculations of chances for short-term benefits, for example, surviving postnatal heart surgery, and the longer-term benefits of living, what all parties agreed would be, a very short life. The parents would only agree to withdrawing life-sustaining treatment at birth if the chance of death from heart surgery was 100%. We now see a potentially intractable conflict over how benefit and appropriate treatment are elaborated. And the practices of religion and genetics, along with many other factors, are contributing to the divide.

How did the case get resolved?

The ethics consultant proposed that it was “ethically permissible to initiate interventions to attain greater postnatal certainty about the cardiac lesion.”12 The parents’ religious understanding of a longer-term benefit—unqualified extension of life—was given deference by permitting this benefit to justify a high-risk surgery if survival were deemed possible. Perhaps the medical perspective on the longer-term benefits of treatment could have been given more weight; regardless, this example demonstrates how religion and genetics are actually related in the practice of shared decision making in a health care setting. nnn Joseph B. Fanning, PhD, is Director of the Clinical Ethics Consultation Service at Vanderbilt University’s Center for Biomedical Ethics and Society.

August-October 2013

Bringing the “Lost Tribes” Home Israel’s Law of Return puts the state in the position of answering a complex question: Who is Jewish and who isn’t?

By Diana Muir Appelbaum Paul S. Appelbaum

and

Volume 26 Number 4

Lemba or some other group were Jewish, it would not ipso facto make their modern descendants Jewish.

Who is a Jew is a complex question, although not more complex than who is British or who is Muslim.

Under rabbinic law, a Jew is someone who converted to Judaism or is the child of a Jewish mother. Israeli citizenship is a separate but interlinked question. Most Israelis of all faiths are citizens simply because they were born the children of citizens. Israel has naturalized a diverse array of individuals, including Vietnamese boat people and migrant workers from the developing world, but it is Israel’s Law of Return that engages particular attention.

Israel is only one of the many old world countries (others include China, Finland, Ireland, Italy, and Japan)

that recognize a “right of return,” providing a special track to citizenship for individuals with an ethnic and/ or ancestral connection. For historical reasons, Israel framed its law not according to the religious definition of a Jew, but as a deliberate effort to insure that anyone who would have met the Nazi definition of “Jew” is eligible for Israeli citizenship. The Nazi rule was that any person with one Jewish grandparent was a Jew and targeted for extermination. Therefore, Israel admits to citizenship individuals with one Jewish grandparent, even when the individual in question would not be recognized as a Jew under rabbinic law. Israel has given citizenship to about 300,000 immigrants from the former Soviet Union in this category, including some who regard themselves as religiously Christian GeneWatch 27

Images: S. W. Anderson

Perhaps the most interesting aspect of the relationship between genetics and Judaism is how little use both Jewish religious law and Israeli law have made of genetic data on identity issues—despite considerable evidence of shared genetic heritage among most groups of Jews.1,2,3,4,5 This is not to say that the possibility that genetics could identify Jews has excited no interest. The ten lost tribes, after all, are still lost, and have never ceased to intrigue. Old assertions that the Pashtun of the Hindu Kush descend from the lost tribes were revived by the notion that high frequencies among them of Y-chromosome haplogroups R1a1a-M198 and the presence of G2c-M377 may signal a link with ancient Jews.6 There was international press coverage when genetic testing showed that the Lemba, a Bantu-speaking, southern African tribal people with a tradition of exotic origin, has a high incidence of the Y-chromosome haplotype common among the cohanim, the Jewish priests said to be descendants of the biblical Aaron, Moses’ brother.7 But even if DNA could tell us that the ancestors of the Pashtun,

and ethnically Russian. No genetic evidence was involved, although theoretically, DNA evidence might be presented by a would-be immigrant to prove an otherwise undocumented connection to a specific, known, Jewish grandparent.

Which brings us to the “lost tribes.” Unlike the majority of Israelis, the self-described Bnei Menashe of eastern India are observant of Jewish law. They say that their ancestors, the Tribe of Manasseh, wandered so long that they lost knowledge of Hebrew and Jewish law, but in the last generation they have relearned these things: they pray, keep the Sabbath, and teach the Torah to their children.

A single, non-peer-reviewed study of the genetics of the Bnei Menashe published in 2004 indicated some incidence of mitochondrial (i.e., maternal) DNA sequences common in the Middle East.8 Even if these results were replicated, they would hardly prove Jewish descent. Without a recognized tradition of acceptance as Jews, the Bnei Menashe must undergo conversion in rabbinic courts, which inquire into their sincerity as converts, not whether there is genetic proof of Jewish ancestry. The Jewish commitment of the Bnei Menashe has impressed rabbinic courts; over 2,000 have converted and immigrated to Israel. Many of the estimated 7,000 remaining in India are expected to do likewise.

The Ethiopian Jews, Beta Israel, by contrast, have a centuries’ long history of living as Jews, although detailed descriptions date only to the 19th century. They knew no Hebrew and had no rabbis, but they had partial Bibles and followed Biblical law carefully, observing not only the Sabbath but also laws such as the sacrifice of a Pascal lamb before Passover that other Jews had ceased to follow after the destruction of the Temple in 28 GeneWatch

70 CE. This, and the fact that they lacked knowledge of Chanukah and were unfamiliar with the Talmud, led to speculation that the community originated as Christians who chose to follow the Hebrew scripture. But the Beta Israel simply explain that they have always been Jewish. Although they lack an origin story like the Bnei Menashe, sympathetic outsiders explain the absence of knowledge of Chanukah (which began around 165 BCE), much less the development of the Talmud (codified around 500 CE), by describing them as the lost Tribe of Dan. Over the centuries rabbinic authorities have been intermittently aware of the existence of Ethiopian Jews. In the early 1500s, the question of the Jewish status of an Ethiopian Jewish woman who had been captured either by slave raiders or in war and was purchased as a slave in Egypt came before David ibn Zimra, a highly regarded rabbinic judge in Cairo. He, like rabbis who have considered the problem since, expressed concern about the absence of rabbinic law in Ethiopia; for example, since the Ethiopians did not have formal conversion procedures, the Jewish status of the descendants of converts they may have admitted over the generations and, therefore, of the entire community, was problematic.

Nonetheless, he ruled that they are Jews despite their unawareness of post-Biblical law, which he assumed was due to the fact that they were descendants of Dan, lost in the Assyrian conquest of 722 BCE. In 1984, the Council of the Chief Rabbinate of Israel reiterated the opinion of David ibn Zimra.

Modern Israelis had doubts of a different sort, questioning the Jewishness of a group that not only looked different from other Jews, but was unaware of so much Jewish

custom and law. Nevertheless, when thousands of Ethiopian Jews fleeing civil war after 1979 requested admission to Israel as Jews, they were brought “home” in a series of dramatic airlifts.

Several studies of the genetics of Ethiopian Jews have shown the Beta Israel to be more similar to nonJewish Ethiopians than to other Jewish communities.9 They do have Ychromosome haplotypes Med and YAP+ 4S, common in Jewish populations, and also found among other Ethiopians, but they are unique in not sharing other genetic markers common to the world’s large, historic Jewish communities.10 Over 90,000 Beta Israel have immigrated to Israel.

No one pretends that there has not been racism and prejudice, but the community’s long history and the traditional approach of rabbinic law trumped doubts based on skin color and DNA. Concern has been expressed in recent years about the potential for genetic data to assume a privileged position where issues of personal and group identity are concerned. For Jewish and Israeli law to have subordinated genetic evidence to more traditional approaches is thus particularly interesting. nnn Diana Muir Appelbaum is an author and historian. She is at work on a book tentatively entitled Nationhood: The Foundation of Democracy, and often writes on topics related to genetic history.

Paul S. Appelbaum, MD, is the Dollard Professor of Psychiatry, Medicine & Law at Columbia, where he directs the Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics.

August-October 2013

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 Genetics is satisfyingly concrete.

The genotypes rolling inexorably from the Punnett square; the millions of miles of DNA curling tidily within the cell nuclei of every human body; the reams of hard data spooling out of genome project after genome project: these suggest a sense of stern factuality. Evolution, however, offers a view of life extending through unimaginable eons, with infinitesimal changes eventually amounting to important differences. The result is a tree of life that challenges plausibility: eucalyptus shares a common ancestry not only with yew but also with you.

In truth, there’s plenty that’s counterintuitive about genetics, and there’s plenty that’s commonsensical about evolution. Moreover, evolution and genetics are “two very closely interwoven disciplines,” as the Genetics Society of America observes, so it is difficult to disentangle the two from each other or from the fabric of biology as a whole.1 Still, relying on a general trust in genetics and a general ignorance of, skepticism about, or hostility toward evolution, creationists regularly attempt to misrepresent genetics—whether the population genetics of the middle twentieth century, the molecular genetics of the late twentieth century, or the genomics of the early twentyfirst century—as posing a problem for evolution.

Volume 26 Number 4

At bottom, creationism is the rejection of evolution, the idea of common descent, and allied scientific principles in favor of supernatural creation. (Believing that God is, in the words of the Nicene Creed, “maker of heaven and earth, and of all that is, seen or unseen,” is insufficient; it’s necessary also to reject evolution.) As such, creationism comes in different varieties, depending on differences in the supernatural creation account offered. The most familiar forms of creationism are based on the Christian Bible, but Jewish, Islamic, Hindu, and even Native American and New Age forms are to be found. Within Christian creationism, the main division is between young-earth creationists, who hold that the world is merely thousands of years old and tend to accept Noah’s Flood as historical and worldwide, and old-earth creationists, who accept the scientifically ascertained age of the earth and tend to reject the universality of Noah’s Flood. Intelligent design, so-called, is not so much a distinctive form of creationism as it is a strategy for promoting it within the confines of American constitutional law: by remaining silent about the identity of the designer, its proponents hoped for proposals to teach generic creationism in the public schools to survive judicial scrutiny.2 Historically, three goals have characterized the creationist movement

in the United States: banning the teaching of evolution; balancing the teaching of evolution with the teaching of the supposed alternatives of biblical creationism, creation science, or intelligent design; and belittling evolution as “just a theory” or as “controversial.” Banning the teaching of evolution was popular during the 1920s, with the Scopes trial as the famous consequence, but the tactic was ended with a Supreme Court decision in 1968. Balancing the teaching of evolution became a major tactic in the wake of the 1968 decision, but each supposed alternative faltered with court decisions, biblical creationism in 1975, creation science in 1982 and 1987, and intelligent design in 2005. Thus, although belittling evolution is a long-standing tactic, it recently became preferred and prominent, with laws enacted in Louisiana in 2008 and Tennessee in 2012 that encourage teachers to misrepresent evolution as controversial.

Throughout, three rhetorical themes have been constant: that evolution is bad science; that teaching evolution is connected to religious, moral, and social problems; and that alternatives or objections to evolution ought to be presented for the sake of fairness.3 It is primarily in the first of these contexts that creationists have abused genetics.

The idea that genetics favors creationism over evolution comes in GeneWatch 29

versions ranging from the silly to the sophisticated. At the silly end of the spectrum is the notion that evolution is debunked by the fact that organisms as different as the opossum and the giant sequoia have the same number of chromosomes. Misconceptions about mutations—that they are rare; that they are inevitably detrimental; that they are incapable of producing novel features, even when repeatedly winnowed by selection—are ensconced in the creationist mainstream, where they form the basis of arguments that evolution is impossible (except within so-called biblical kinds). Sometimes these are ornamented with specious claims about genetic information. At the sophisticated end of the spectrum are the contentions of creationists who have pounced on recent claims in the scientific literature that more than eighty percent of the human genome is functional, inferring that such a high degree of function bespeaks design. These claims have been challenged in the scientific literature as involving a dubious notion of functionality.4 But whether or not the claims survive scientific scrutiny, the creationist inference to design—reminiscent of William Paley’s 1802 blockbuster Natural Theology, and possessing all of its scientific rigor—is anything but scientifically compelling.

Genetics is also abused in the service of claiming that evolution is, if not inferior to creationism, at least controversial. A recent example was provided in Kentucky, where public comments were offered about the Next Generation Science Standards, under consideration at the time for adoption in the state. Based on a framework formulated by the National Research Council, the standards treat evolution as a unifying idea of the life sciences. According to a summary of the comments, “A 30 GeneWatch

commenter stated there are non-religious objections to evolution, and cited […] Moeller [sic] and Newman, epigenetics, the work of the Altenberg 16, […] and others.”5 The commenter was apparently referring to scientific work seeking to incorporate new ideas about genetics within evolutionary biology.6 But such work is at the frontier of scientific thought; it is not appropriate for inclusion in state science education standards.

More importantly, none of these scientists would describe their work as providing “objections to evolution.”

The editors of the proceedings of the Altenberg symposium, for example, conclude the introduction to their volume by commenting, “150 years after the publication of the Origin of Species, evolutionary theory is still making enormous progress in its capacity to explain the world we live in.”7 Ironically, while creationists abuse genetics to argue against evolution, they also argue against evolution by holding it responsible for the abuses of genetics, particularly eugenics, the program of improving the genetic composition of the human population. Tainted by its coercive implementation, particularly in Nazi Germany, eugenics has a bad odor today, and creationists are eager to blame its historical excesses on evolution.

But eugenics is historically and conceptually separable from evolution.

After all, Plato’s Republic argued for selective breeding of humanity two millennia before Darwin’s Origin.

In its modern heyday, eugenics was supported on scientific and extrascientific grounds not connected to evolution. For instance, it was often promoted by clergy and churches that were not notably invested in evolution, and even by card-carrying creationists such as William J. Tinkle.8 Moreover, eugenics in its heyday was based on a variety of claims

about heredity that are no longer accepted; there is hardly any risk that teaching evolution will encourage students to accept eugenics. Finally, it is uncontroversial that science education in general needs to distinguish scientific issues from policy issues, is from ought. Students who are properly taught about evolution aren’t being offered any recommendations about social policy.

Even though creationists are fond of citing the failure of Charles Darwin’s own theory of heredity and of quoting Alfred Russel Wallace’s verdict on “the general relation of Mendelism to Evolution”—that the former “is really antagonistic to such evolution”9—there’s never been a time when it made scientific sense to talk about evolution and genetics as opposed. True, there have been occasional tensions and conflicts between the dominant theories of evolution and the dominant theories of genetics. Most famous is the clash between Mendelians and biometricians, which began to be reconciled by the foundation of population genetics by J. B. S. Haldane, Ronald Fisher, and Sewall Wright, and was finally resolved by the establishment of the Modern Synthesis by Theodosius Dobzhansky, Ernst Mayr, and G. G. Simpson. As both evolution and genetics continue to advance, such tensions and conflicts are likely to continue—and also to continue to be exploited by creationists. But the scientific community firmly agrees with the evolutionary biologists Brian Charlesworth and Deborah Charlesworth about the “value of the ongoing interaction between genetics and the study of evolution”—and with the geneticist Theodosius Dobzhansky that “nothing in biology makes sense except in the light of evolution.”10 nnn Glenn Branch is Deputy Director of the National Center for Science Education.

August-October 2013

Can Faith Broaden Reason?

A biologist reflects on his religious life.

By Robert Pollack The question “Can faith broaden reason?” is of such great intrinsic importance, and the risk implied by the possibility that the answer is “no” is so great, that simply to explain why the answer is “yes” is well worth the time and effort. Because this question lies at the boundary of the knowable and the unknowable, it challenges both my faith and my science.

The unknowable as a notion does not come easily to the scientificallyminded. Science works at the boundary of the known and the unknown, a different place entirely. Dealing with the unknowable is a project full of paradox, requiring that one talk about the inarticulatible and anatomize the unmeasurable. I have chosen to work at this boundary nevertheless, because I have the habits of thought of a scientist.

As soon as the notion of the unknowable as distinct from the unknown placed itself before me, the shock changed both my career and the way I see the world. The unknown was the raw material of my career, and the notion that it might be bounded in this way seemed to me deeply subversive of the entire enterprise.

Science proceeds by the testing of hypotheses, that is, ideas subject to disproof by testing of the natural world. A hypothesis that can stand up to testing expands the territory of the known, but the testability presents a problem: scientific hypotheses about the unknowable are by definition not meaningful.

Put another way, it is not worth a moment of anyone’s time to seek the proof through science of any religious belief. So, I need first to provide some Volume 26 Number 4

working terminology for the unknowable, without calling upon the tools of scientific hypothesis- testing.

Ask any scientist what lies at the core of her work, you will learn that it is not the experimental test of the hypothesis – although that is where most of the time and money of science go. It is the idea, the mechanism, the insight that justifies all the rest of the work of science. The moment of insight that reveals the new idea, where an instant before there was just fog, is the moment when the unknown first retreats before the creativity of the scientist.

Here, then, is the first door into the unknowable: where does scientific insight come from? Surely from someplace currently unknown. Let us consider the possibility that scientific insight, like religious revelation, comes from an intrinsically unknowable place.

It is a safe bet that working scientists would agree to the notion that there is a lot we don’t know yet, and that the boundary between the known and unknown which science pushes back is the shoreline of a small island floating in a vast sea of the unknown. Let us say – make the further hypotheses – that the sea of unknown is not the edge of everything, and that the unknown itself is wholly bounded, blurring into an intrinsically inaccessible and immeasurable unknowability.

Then science would still be increasing the territory available to the world of the understood. As the length and complexity of the shoreline with the unknown grew in step with every discovery, there would still be no edge to the unknown

except the unknowable. The enterprise of science would be assured of a limitless future of successes, none of them ever bringing the unknowable any closer.

Can these hypotheses – that the unknowable exists, and that it will remain unknowable – be tested through the methods of science?

Certainly not, as they posit notions that resist testability. But they are nevertheless a fair representation of world- wide human experience outside of science. More to the point today, they are, as well, consistent with the actual experience of scientists, if not the institutional ideology of organized science.

I can anticipate the response of some to what I have said so far: to beg the question. The unknowable is not a category that gives itself easily to demonstration of its existence. If it were a mental quirk only, a fantasy not worth worrying about, an idea of something that cannot be, then that would be a sufficient answer: No unknowable, no problem. The problem with that glib answer is that science itself depends on the periodic emergence of the unknowable for its own progress.

There is no way to think through a good idea in advance; insight is not a phenomenon subject to prior scientific analysis. At every instant of insight, every moment of Aha!, what had not been conceivable, becomes clear. Where was the idea before it was thought? Only afterward, once it was thought, can science begin the determination of the known from the unknown, using the idea as a guide.

But before it was thought, there were no tasks, no path, no idea that there GeneWatch 31

was even a question to ask.

The unknowable is worth a scientist’s attention if for no other reason than that it is the source of insight, the irrational part of science that has no chance of being brought under rational control. Moments of insight in science are not reproducible, nor is their occurrence modeled by any hypothesis of its own.

As scientific insight cannot be harnessed to the engine of experimental testing, each occurrence may as well be a gift from an unknowable source.

Good ideas emerge in the mind of a scientist as gifts of the Unknowable.

They are not, as data are, simply trophies of a struggle with the unknown.

The essence of the disprovable is reproducibility; insight is by definition not a reproducible thing. Recall how few such ideas have come to any of us in the hundreds of years we have been trying to understand the world and ourselves through science.

Yet without moments of insight that emerge from nowhere, science bogs down in mindless repetition of acts that look serious but cannot be in the service of anything except confirmation of what is already known.

Scientific insight is not the only example of such a gift from the unknowable. Other events — also occurring rarely, inexplicably, unpredictably – can give meaning to our lives, just as scientific insights can explain the world outside ourselves.

32 GeneWatch

By meaning, in this context, I mean a new understanding drawn from the internal, emotional content of the experience, not the intellectual understanding which may follow as it does when experimentation proves a scientific insight to be useful. Meaning, purpose, teleology, the end of things: these are not notions that we naturally associate with science. Such experiences are commonly called religious.

Yet the central event in science — the sudden insight through which we see clearly to a corner of what had been unknown — is so similar to these religious experiences, that I see only a semantic difference between scientific insight and what is called, in religious terms, revelation. That difference remains small, whether one says that insight or revelation both come from nowhere interesting, or that they come from the unknowable which surrounds all that can be known, or that they come from God. The differences between science and religion which have crystallized and reified into a wall that separates the two do not lie in the semantic difference between insight and revelation. Whether prepared for or not, prophetic experiences and scientific insights will occur with similar rarity, irrationality and unpredictability.

The real differences grow from the different uses made of scientific and revelatory insight.

In both, insight takes the form of a vision of an invisible and hidden mechanism. In science such insights are made into guides for learning how nature works, thereby reducing our ignorance of the world around us. Guiding the formation of religious obligation, revelatory insights are prerequisite to the rituals and observances of a religion, which ease the burden of living by lifting a felt ignorance of the purpose and meaning of our mortal lives.

In all organized religions I am aware of, revelation takes the form of a sense of being overwhelmed by sheer feeling, arising within without reason nor cause. Just as a scientist prepares for insight by deep immersion in the study of what has been dragged out of the unknown by her predecessors, a person adept at religious insight – a holy person, a prophetic person – may prepare by study of earlier revelation and prophesy, and by trying to be alert to the moral or lesson taught through what might be — to an unfeeling observer — just a coincidence.

Though both science and religion presume that the territory of the unknown is vast, most religions are far more comfortable with the notion of a residue of unknowability than are most sciences. Many practicing scientists instead believe – they would say they know – that what is not known today must and will be known

August-October 2013

tomorrow, or the next day, and that this will go on until everything is known.

The notion that nothing exists except what is knowable is wholly unprovable. Holding on to this belief in the absence of any way to test it through experimentation, and despite the counter-evidence of scientific insight itself, puts science at the risk of trapping itself in dogma. Like the worst of religious dogmas, the insistence that everything is knowable, is an unprovable position taken in the face of the evidence of the natural world. In this case, the evidence includes the fact of uncontrollable insight as the wellspring of scientific discovery.

Some scientists will argue that the reproducibility of scientific experiments assures that science as an enterprise can always be brought to internal consistency, while religions, free to call upon individual revelation and unreproducible, miraculous events, necessarily fall into contradiction with one another and thereby cancel any reason for a sensible person to take any of them as seriously.

In a negative template of this position, many people of faith will argue that science is a fragmented enterprise unable to paint a coherent picture of the natural world, limited by conflicting and inconsistent models and the finite limits of a mortal mind.

Though many scientists cannot

like me are not at all used to putting religious feelings in the foreground, and rather have the habit of pushing our feelings away, repressing them into unconscious reservoirs from which they may emerge, but where they do not interfere with the dream of lucid rationality.

This makes speaking about religious feelings in an academic setting particularly tricky. Scientists and others who use their powers of repression to avoid accepting the reality of religious feeling or even its origin in the natural world, tend to have great difficulty accounting for such feelings even in themselves. Not just moments of insight and revelation but other feelings as well – emotional states that overtake one, unbidden and unplanned by conscious rational anticipation – seem to be a different order of phenomena that those easily studied under reproducible conditions; it is extremely difficult to do a controlled experiment on feelings.

In terms of the expected behavior of scientists, strong feelings as such are also in bad taste. Data have to be examined in terms of the model they test, and models as well as data have to be able to stand on their own in the eyes of other scientists. This situation too has its mirror image in organized religion, where a spontaneous feeling of disbelief or doubt in the face of incomprehensible evil or simple bad luck may not be easily squared with the presumption that we are moral beings in a moral universe. Nor can all of the unwanted strong feelings associated with love, aggression, nor of course death, be fitted into most religious frameworks of expected right conduct. Too much doubt is as much in bad taste from a religious

GeneWatch 33

Images: S. W. Anderson

Volume 26 Number 4

really accept that anyone could believe in a way around mortality, and though many religious persons cannot really believe that any serious person could fail to experience these feelings, some people – I am one of them – choose to carry both sets of thoughts at once.

In my 1999 book The Missing Moment I concluded that current scientific studies of the brain and the mind required us to acknowledge that science has an irrational component, and that scientists are likely to experience this irrationality as the same waves of awe, joy, fear or wonder that can overtake a religious person, or even the “oceanic experience” of a shared, external, unknowable presence which Freud protested too much that he could not feel.

The barrier erected by scientists who push aside, deny or ignore these irrational states of mind is an artificial, unnecessary one, built on denial of the reality that their own work depends upon uncontrollable and unpredictable moments of insight. The same artificial barrier is maintained from the other side with equal futility, each time the resultant discoveries of science are denied, ignored or pushed aside by people anxious to protect the same irrational states of mind so precious to them in their religious faith.

To dismantle the wall from both sides, both camps will have to admit what they must already know: the reality of irrational inward experience.

They both will have to acknowledge it as the source of the unexpected and unpredictable insight upon which both organized science and organized religion depend. Such admissions will not come easily. Characters

person as is too much enthusiasm from an overeager experimenter.

And yet we find ourselves free to make these choices, awkward as we may feel in doing so. Judaism places a high value on the reality of such uses of free will. The entire framework of Jewish understanding of our place in the world, our responsibilities to God, and to each other, is built upon the unique human capacity to make irrational choices as well as calculated decisions. Decisions may be made by many species, and the selective advantage of a brain wired for logic is plain, but only a person can make a choice despite calculation, rather than because of it.

In the Jewish tradition the God who has existed before time and the universe began, created both time and the universe in order to have, in time, creatures – the word means things created – with free will, who could then choose to say thanks for their and the world’s existence. For thanks to be proper and meaningful – the proper form of thanks is to bless God – these creatures would need absolute free will to choose whether or not to do so.

Hence the unavoidability of randomness, accidents, and for that matter evil in religious terms: all must be allowed to result, whether by the wrong human choice or by truly random occurrence, because to allow any to be preventable by predetermining human choice, would be to gut the purpose of the creation.

The absolute requirement of human free will in this religious vision shifts human choice into the foreground, and mechanisms of natural selection which yield a person who can make the unexpected choice into the background.

This set of unprovable assumptions — so bizarre in their distance from anything reproducibly known through science and yet so familiar 34 GeneWatch

in their high regard for the critical step of insight in science — validates meaning and purpose in a living world which is the product of the uncaring, ever-changing, always-imperfect processes of natural selection.

This line of argument is articulated beautifully in Adin Steinsaltz’s book The Strife of the Spirit, in the essay “Fate, Destiny and Free Will.”

I had not yet read his essay when he and I first talked about these matters. I had just read an earlier article

by Richard Dawkins, and was quite astounded by his capacity to reduce religious thought to an especially successful kind of ideational parasite.

Rabbi Steinsaltz’s answer was to give me a reference to his essay, with the passing remark: “God says, ‘Get Me a thinking creature, I don’t care how.’”

In specifically Jewish terms, then, it is the God-given, inexplicable reality of free will that allows us to act well — or not. That choice – available not just to Jews but to all people as their birthright – makes us all the active determiners of our fate. Pain, suffering, unreasonable maldistribution of good and bad fate: these are the very stuff of the natural world, the visible expression of the random genetic variation which provides natural selection with the eerie capacity to produce some living thing that will survive any contingency.

It is my faith that informs me of my obligation as a scientist to use my own free will to work against these deepest mechanisms of the natural world, and thereby to work against the meaningless of these mechanisms.

To restate this answer to the question before us in concrete and current terms, I argue that scientists of faith have the obligation to “broaden reason” by working together to assure that their science is put to the amelioration of injustice, and to the creation and protection of those

freedoms prerequisite to the free-will choice to treat one another with love.

Dr. Martin Luther King taught this in a speech delivered on April 4, 1967 at a meeting of “Clergy and Laity Concerned” at Riverside Church: “We must rapidly begin...we must rapidly begin the shift from a thingoriented society to a person-oriented society. When machines and computers, profit motives and property rights, are considered more important than people, the giant triplets of racism, extreme materialism, and militarism are incapable of being conquered.

“A true revolution of values will soon cause us to question the fairness and justice of many of our past and present policies. On the one hand, we are called to play the Good Samaritan on life’s roadside, but that will be only an initial act. One day we must come to see that the whole Jericho Road must be transformed so that men and women will not be constantly beaten and robbed as they make their journey on life’s highway.

True compassion is more than flinging a coin to a beggar. It comes to see that an edifice which produces beggars needs restructuring.” nnn Note: This paper is adapted from my book The Faith of Biology and the Biology of Faith, published by Columbia University Press in 2000, and re-issued in paperback in 2013. It was presented as a talk to Communion and Liberation in 2008.

Robert Pollack, PhD, is Professor of Biological Sciences, Earth Institute Professor, Adjunct Professor of Religion, Lecturer in Psychiatry at the Center for Psychoanalytic Training and Research, and Director of the Earth Institute’s Center for the Study of Science and Religion, all at Columbia University; and Adjunct Professor of Science and Religion at Union Theological Seminary.

August-October 2013

Wanton Misconduct The story of a whistleblower’s decade-long struggle against one of the world’s largest corporations.

By Becky McClain This is the story of a whistleblower: me.

I was working as a molecular biologist at a Pfizer laboratory. After I raised concerns about worker safety at the lab, I was told to stop documenting the problems I saw; when I continued to raise concerns, another employee was assigned to work on a dangerous genetically engineered virus on my bench without my knowledge; when I became ill and requested records of what viruses I may have been exposed to in the lab, Pfizer refused; when I took the matter to OSHA, Pfizer fired me. My health deteriorated, but Pfizer repeatedly blocked my attempts to get information about the virus. And when I began to take legal measures, I learned just how extensive and pervasive Pfizer’s influence really is.

Important people within a broad array of institutions—from government agencies to academia to the legal system—have conflicts of interest

Volume 26 Number 4

giving them incentive to act in Pfizer’s favor. These networks are ingrained within the current power structure, causing unjust legal disadvantages, biased and illegal investigations, and unreasonably long legal battles for any whistleblower who might advocate for public health and safety in the biotech arena.

I am still amazed today that Pfizer’s influence was able to delay and obfuscate my rights to free speech regarding worker and public health and safety for ten years. The delay and roadblocks did not come from a lack of evidence in my case, but rather because of conflicts of interest that exist within our power structure which allow a lack of transparency, responsibility and accountability in the biotech arena. So when I went up against Pfizer in a legal battle as a whistleblower for safety in biotech labs, Pfizer’s immense web of economic and political relationships were their most powerful advocate

against me and against public health and safety.

For example, the Yale University Occupational Health Division, without any substantiation to back up their claims, sent a letter to my doctor stating that the lentivirus I was exposed to at Pfizer “is unable to cause illnesses.” When I discovered this, I was outraged. The lentivirus was indeed dangerous; the evidence later released on the lentivirus confirmed that the virus could infect humans and was designed to attack human genes. I later learned that Pfizer was giving Yale a substantial amount of money.

I needed medical help desperately.

I believed I finally had discovered where to go for honest and expert medical help. In conjunction with my primary physician, I had coordinated and scheduled a medical appointment at the Neurology Department at Columbia University with a specific physician and researcher who was

GeneWatch 35

an expert on genetically engineered lentiviruses, the same virus type that I had been exposed to at Pfizer. I was suffering immensely from the neurological illness brought on directly after the exposure. I had scientific evidence that the agent in fact could infect humans and had caused my illness. This expert knew of the dangers associated with exposures to genetically engineered lentiviruses. He could not discount my exposure and illness without losing credibility to his own work.

After waiting for months and spending close to $900 for an appointment to see this lentivirus expert at Columbia, I was in for a big disappointment. Columbia University did a doctor switch on me.

Instead of the expert, another physician showed up. The new doctor entered the room and without any medical inquiry or testing of any kind regarding my documented biological exposure at Pfizer, he called me “malingering” and suggested that I be admitted to a psychiatric ward.

I had been set up.

Although I had never agreed to 36 GeneWatch

see the second doctor and had filed a complaint against him for his unprofessional behavior, Pfizer became privy to the sham appointment through Columbia University. Pfizer used the doctor’s phony medical opinion as an aid to throw out any legal remedy I had in district court concerning my occupational exposure and illness.

The facts are that Columbia University and their Neurology department have received millions of dollars in business funds from Pfizer for biotech research.

Academic and medical conflicts of interest did not stop there.

I was informed by Connecticut’s Department of Public Health that a PhD from Stanford University, acting as an independent expert during a state investigation of my case, concluded that the genetically engineered lentivirus involved in my case was not dangerous and did not require BL2 biocontainment. The statement was false, but the “expert” had incentive to side with Pfizer. At that time he had been on Pfizer’s payroll in collaboration to build a

biotech company. He never disclosed his conflict of interest surrounding my case to Stanford University or the Connecticut Department of Health.

Unfortunately, because of his statements, the Department of Public Health dismissed my case regarding serious biocontainment and safety issues at Pfizer.

Government agencies have their own incentives to protect Pfizer. In my case, egregious conflicts of interest were plainly evident at OSHA, the agency responsible to protect worker’s safety rights and whistleblower rights.

The conflicts of interest at OSHA began with Pfizer’s attorneys, Jackson and Lewis, a top union-busting and anti-worker law firm. One of Jackson and Lewis’ own attorneys worked at OSHA, and was subsequently appointed Assistant Secretary of Labor.

This put him in the position to deny my OSHA appeals outright, even after Senator Dodd called to his attention several OSHA procedural errors and injustices done in my case.

In fact, my entire OSHA investigation was a sham. My OSHA August-October 2013

investigator stole my attorney client privileged documents which, subsequently, landed in the hands of Pfizer without our knowledge. She lied on her investigational report, refused to conduct a safety inspection at Pfizer and told me that she was immune to any repercussion from her actions on my case.

Even worse, OSHA ruled that trade secrets superseded my rights to my exposure records to obtain healthcare for my occupational exposure. This ruling established a worrisome legal precedent. It poses egregious human rights issues, inhibiting access to proper healthcare for all biotech workers and injured workers who become ill through an exposure to a biological agent. It is a way to hide serious injuries of public concern within the biotech field.

In the end, OSHA had documented evidence that Pfizer management had refused us remedy to serious biocontainment problems at Pfizer and that employees had fallen ill from exposures at Pfizer. Despite these facts, my investigator still threw out my OSHA claim and refused to do a safety inspection at Pfizer. Instead, she wrote that I had a character flaw and was out to get money.

Pfizer made sure I ran into roadblocks at every turn—even when I applied for workers’ compensation.

Workers’ Compensation is a state-independently run medical care system to which injured workers are mandated to proceed to obtain medical care for an occupational injury or illness.

Through this system injured workers are supposed to receive swift and efficient medical care for their injury without the need for litigation. In exchange for these benefits, American workers lose most of their rights to file a lawsuit against an employer because of their injury at work.

Yet in my first workers’ Volume 26 Number 4

compensation hearing, four Pfizer attorneys showed up. My attorney turned to me in shock and said that he had never experienced anything like this before. The workers’ compensation administrative judge was visibly uncomfortable when he entered the room to find four Pfizer attorneys.

He ruled that day that worker’s compensation had no jurisdiction to order Pfizer to provide my exposure records to inform my health care. As a result, I did not receive any workers’ compensation whatsoever for the illness I contracted on the job at Pfizer—nor did I have access to the records that would have identified which virus caused my illness.

Since workers’ compensation administrative judges are political appointees, they can lose their jobs if unpopular decisions are made against companies. This creates an obvious conflict of interest … especially when four Pfizer attorneys show up to send a strong message.

After years of struggling, it was only in the federal court system that I received any real justice. But even in the federal district court, conflicts of interest were evident. In this case it was with the leading judge, Vanessa Bryant.

In 2006, I took Pfizer to court. Two weeks before the trial began Judge Bryant suddenly threw out the willful and wanton misconduct claim against Pfizer. My attorneys and I were shocked since this claim was the most serious legal and economic threat to Pfizer involving my exposure and illness. Even though this claim has high standards of proof, I had adequate evidence to have the jury hear the evidence on the claim.

The judge’s antics did not stop there. When Dr. Michael Siciliano, a 30 year career Professor of Genetics, was finally called to take the stand as my expert witness, Judge Bryant

refused to allow him to testify based on a frivolous technicality. Pfizer was allowed “expert” witnesses, but I was not allowed any.

Even more outlandish, Judge Bryant refused my attorney’s attempt to admit documented and scientific evidence that linked my serious illness to a genetically engineered lentivirus exposure at Pfizer. She would not allow the jury to hear our evidence concerning the dangers involved with infectious genetically engineered lentiviruses created at Pfizer. Nor would she allow evidence of Pfizer’s misuse of these technologies or Pfizer’s blatant continued retaliation against me after I fell ill from the exposure to the lentivirus. She would not allow the jury to see the evidence that Pfizer denied my exposure records for health care under a pretense of a trade secret claim. In the end, the jury was never informed that I had incurred a dangerous exposure to a genetically engineered virus at Pfizer and had become seriously ill.

The trial appeared to be one-sided with Judge Bryant making strategic moves in favor of Pfizer. It was quite obvious not only to me, but also to several other people who came up to me and displayed their shock and dismay while watching the trial.

Despite the judicial bias, my story and the little evidence allowed in front of the jury made a convincing case for my free speech and whistleblower claims. Several times during the trial the jurors’ faces were notably aghast at Pfizer’s malicious behavior against me. Those moments gave me confidence that I might have some sort of justice in the end.

And I did. The jury in April 2010 determined that Pfizer had engaged in willful and wanton misconduct against me for my free speech regarding safety matters of public concern. They awarded me $1.37 million GeneWatch 37

plus punitive damages. Yet I wonder what would have been awarded if I would have been allowed to show all the evidence against Pfizer, including my exposure and illness.

Nevertheless, the jury outcome gave me some hope in our system. I had been through 7 years of false investigations, character assassinations and suffered a horrible illness because of Pfizer. It was only in front of a jury when any real justice came. It is proof that the power of the people is amazing.

Judge Bryant finally disclosed her conflict of interest and recused herself from my case after I won at trial.

Her husband, an investment professional, had direct monetary and employment relationships with Pfizer’s attorneys, Jackson and Lewis. But before Judge Bryant recused herself, she had delayed my case for an entire year. It was after this delay that Pfizer appealed the case to the US Court of Appeals for the 2nd Circuit where justice was delayed for almost another three years.

Nevertheless, the federal appellate level is where Pfizer finally hit a brick wall. Pfizer’s “influence” to delay justice ended in December 2012, when the Appeals Court ruled in my favor. In fact, the Appeals Court justices called Pfizer malicious and agreed with the jury that my safety complaints were of public concern.

They agreed that Pfizer had retaliated against me with willful and wanton intent. Pfizer was out of appeal options and out of time. The court eventually forced Pfizer to pay me. It came this year, 10 years after Pfizer began a long and hostile attack against me. Pfizer attacked my health and my livelihood … all because of my public health and safety advocacy for a safer work environment.

Yet despite my success at the appellate court level, my trials are not 38 GeneWatch

over. Pfizer’s influences reached past the Appeals Court to hit home directly.

Let me explain.

Two months before the jury trial started in my case, my husband, a top level drug and pharmacy investigator at the FDA, came home one day to tell me that he was told by FDA management to either “settle with Pfizer or there is no future for you here.”

Settlement with Pfizer meant being “gagged” to discuss what happened at Pfizer; that is, giving up my free speech rights regarding worker safety and public health and safety. We could not believe that my husband’s employer, a government agency, was interfering with our rights to go to trial through threats of termination.

We were already under financial constraints since I had lost my career, as well as my health. So their threat was taken seriously. Nevertheless, we proceeded to trial.

Soon after I won my jury trial in April 2010, the FDA acted on their threat. My husband experienced an onslaught of unwarranted discipline and retaliation through the FDA. The extreme unjustifiable discipline continued for two years while we awaited the appeals decision. The pressure to settle was still upon us. My husband was even prevented from performing his normal duties of drug and pharmacy inspections at a vital time when companies needed critical oversight to protect the public.

Instead FDA management wasted government resources and sent my husband to faraway sites for weeks, to scan, shred and file documents of no significance.

What is more alarming is that even after my husband left the FDA and was working for a different agency, the FDA continued to go after him by fabricating false AWOL charges and placing reprimands in my husband’s

file. My appeals case was not settled as yet, and the FDA’s attack continued to place mounting economic pressure on us. These unwarranted disciplinary actions still negatively impact my husband’s career today.

Despite showing a gross and malicious disregard for free speech and worker safety, corporations like Pfizer have an overbearing scope of influence in our society. And because of this fact, it is likely to be a fierce fight ahead to build the worker and public health and safety protections that are critically needed within the biotech industry.

Yet, the most important thing that I learned in my ten years of battle against Pfizer is to be courageous and never give up, no matter the consequences. Let us, therefore, help one another to garner more courage, support and insight in protecting worker safety, whistleblower rights, and threats to free speech. Let us continue the fight against these huge webs of conflicts of interest that operate against the public’s trust, making them accountable. As biological technologies advance at a rapid pace, we need to work together to take a stand. We need to do what is right to protect workers’ rights and public health and safety.

Pfizer has infiltrated many government agencies and other power structures to stop any and all whistleblowers. The only hope we have is to get our government to grant us the power to fight back. This battle needs more public support and I hope my story can arouse people to join us in this struggle. nnn Becky McClain, PhD, was a molecular biologist for 23 years, including her time at the Pfizer laboratory in Groton, Connecticut. She is currently a member of the Board of Directors for the Alliance for Humane Biotechnology.

August-October 2013

Endnotes TallBear, p. 11 1. “Indigenous Peoples Oppose National Geographic & IBM Research Project that Seeks Indigenous Peoples’ DNA,” April 13, 2005, press release, Indigenous Peoples Council on Biocolonialism, accessed September 16, 2013, http://www.ipcb.org/ issues/human_genetics/htmls/geno_pr.html.

2. “National Geographic and IBM Launch Landmark Project to Map How Humankind Populated Planet,” April 13, 2005, press release, National Geographic.com, accessed September 16, 2013, https:// genographic.nationalgeographic. com/wp-content/uploads/2012/07/ Landmark_Project_4_13_05.pdf.

3. Ibid, Indigenous Peoples Council on Biocolonialism.

4. I write extensively on the race politics of this genetic genealogy list in my just published book, Native American DNA: Tribal Belonging and the False Promise of Genetic Science (University of Minnesota Press, 2013).

5. Jenny Reardon, “The Democratic, Anti-Racist Genome? Technoscience at the Limits of Liberalism,” Science as Culture 21(1) (2012).

Mueller and Grodin, p. 21 1. Churchill LR. Religion, Spirituality, and Genetics: Mapping the Terrain for Research Purposes. Am J Med Genet Part C Semin Med Genet 2009;151C:6-12.

2. Pew Forum on Religion and Public Life.

Religious Landscape Survey. 2008.

3. Kosmin BA., Keysay A. American Religious identification survey (ARIS 2008). Hartford: Trinity College.

4. Botoseneanu A, Alexander JA, BanaszakHoll J. To Test or Not to Test? The Role of Attitudes, Knowledge, and Religious Involvement Among U.S. Adults on Intent-to-Obtain Adult Genetic Testing.

Health Educ Behav 2011;38:617-628.

5. Bartlett VL, Johnson RL. God and Genes in the Caring Professions: Clinician and Clergy Perceptions of Religion and Genetics. Am J Med Genet Part C Semin Med Genet. 2009;151:41-51.

6. White, MT. Making sense of genetic uncertainty: the role of religion and spirituality. Am J Med Genet Part C Semin Med Genet 2009;151:68-76.

7. Cragun RT, Woltanski AR, Myers MF, Cragun DL. Genetic Counselors’ Religiosity & Spirituality: are genetic counselors different from the general population?

J Genet Counsel 2009;18:551-566.

8. Bartlett VL, Johnson RL. God and Genes in the Caring Professions: Clinician and Clergy Perceptions of Religion and Genetics. Am J Med Genet Part C Semin Med Genet. 2009;151:41-51.

9. Lemons J, Ragsdale J, Vaughn L, Grossoehme D. “I didn’t know it existed before you called”: protestant clergy experience, education and perceptions regarding genetics. J Genet Counsel 2013;22:226-237.

10. Reis LM, Baumiller R, Scrivener W, Yager G, Warran NS. Spiritual Assessment in Genetic Counseling. Journal of Genetic Counseling 2007;16:41-52.

11. Puchalski CM. The role of spirituality in health care Proc (Bayl Univ

Volume 26 Number 4

Med Cent). 2001;14:352–357.

12. Anderson RR. Religious traditions and prenatal genetic counseling. Am J Med Genet C Semin Med Genet. 2009;151C:52-61.

13. Reis LM, Baumiller R, Scrivener W, Yager G, Warran NS. Spiritual Assessment in Genetic Counseling. Journal of Genetic Counseling 2007;16:41-52.

14. Hudson K, Scott J, and A Kalfoglou, eds. Public Awareness and Attitudes about Reproductive Genetic Technology Washington, DC: Genetics and Public Policy Center, 2004.

Fanning, p. 24 1. Renee D. Boss, Kathryn W. Holmes, Janyne Althaus, Cynda H. Rushton, Hunter McNee and Therea McNee. “Trisomy 18 and Complex Congenital Heart Disease: Seeking the Threshold Benefit.” Pediatrics (2013) 132;163.

2. Alasdair MacIntyre. After Virtue.

Notre Dame, Indiana: Notre Dame University Press, 1981.

3. Richard Rorty. “Religion as a Conversationstopper” in Philosophy and Social Hope. New York. Penguin, 1999.

4. Leon Kass. “The Wisdom of Repugnance: Why We Should Ban the Cloning of Human Beings.” The New Republic (June 2, 1997).

5. Robert Sinsheimer. The Book of Life.

Reading, Mass.:Addison-Wesley, 1967.

6. James Watson. The Lives to Come: The Genetic Revolution and Human Possibilities.

New York: Simon and Schuster, 1996.

7. Michael Walzer. Spheres of Justice.

New York: Basic Books, 1983.

8. Robert Brandom, Making it Explicit. Cambridge, Mass.: Harvard University Press, 1994.

9. Renee D. Boss et al. “Trisomy 18 and Complex Congenital Heart Disease: Seeking the Threshold Benefit.” Pediatrics (2013) 132;162 10. Ibid.,162.

11. Ibid., 163.

12. Ibid., 164.

Appelbaum and Appelbaum, p. 27 1. Behar, D.M., et al. 2006. The matrilineal ancestry of Ashkenazi Jewry: portrait of a recent founder event.

Am J Hum Genet. 78(3):487–497.

2. Feder, J., et al. 2007. Ashkenazi Jewish mtDNA haplogroup distribution varies among distinct subpopulations: lessons of population substructure in a closed group. Eur J Hum Genet. 15(4):498–500.

3. Behar, D.M., et al. 2008. Counting the founders: the matrilineal genetic ancestry of the Jewish Diaspora. PloS ONE. 3(4):e2062.

4. Hammer, M.F., et al. 2000. Jewish and Middle Eastern non-Jewish populations share a common pool of Y-chromosome biallelic haplotypes. Proc Nat Acad Sci. 97(12):6769–6774.

5. Nebel, A., et al. 2001. The Y chromosome pool of Jews as part of the genetic landscape of the Middle East. Am J Hum Genet. 69(5): 1095–1112.

6. Lacau, H., et al. 2012. Afghanistan from a Y-chromosome perspective.

Eur J Hum Genet. 20:1063–1070.

7. Thomas, M.G., et al. 2000. Y chromosomes traveling south: the Cohen modal haplotype and the origins of the

Lemba--the “Black Jews of Southern Africa.” Am J Hum Genet. 66(2):674-86.

8. Maity, B., et al. 2004. Tracking the genetic imprints of lost Jewish tribes among the gene pool of Kuki-Chin-Mizo population of India. Genome Biol. 6:PI, available at: http://genomebiology.com/ content/pdf/gb-2004-6-1-p1.pdf.

9. Lucotte, G., Smets, P. 1999. Origins of Falasha Jews studied by haplotypes of the Y chromosome. Hum Biol. 71(6):989–93.

10. Hammer, M.F., et al. 2000. Jewish and Middle Eastern non-Jewish populations share a common pool of Y-chromosome biallelic haplotypes. Proc Nat Acad Sci. 97(12):6769–6774.

Branch, p. 29 1. Statement on evolution and creationism.

Genetics Society of America, 2013. <http:// genetics-gsa.org/policy/pp_evolution.shtml>.

2. Scott, E. C. 2009. Evolution vs. creationism: an introduction, 2nd ed. University of California Press. Berkeley.

3. Branch, G., Scott, E. C., Rosenau, J. 2010. Dispatches from the evolution wars: shifting tactics and expanding battlefields. Annual Review of Genomics and Human Genetics 11:317¬–338.

4. Graur, D., Zheng, Y., Price, N., Azevedo, R. B. R, Zufall, R. A., Elhaik, E. 2013. On the immortality of television sets: “function” in the human genome according to the evolutionfree gospel of ENCODE. Genome Biology and Evolution doi: 10.1093/gbe/evt028.

5. Statement of consideration relating to 704 KAR 3:303 Kentucky Core Academic Standards. Kentucky Department of Education, 2013. <http://portal.ksba.org/public/Meeting/Attachments/DisplayAttachment. aspx?AttachmentID=178938>.

Quotation from p. 113.

6. Lamb, M. J., Jablonka, E. 2005. Evolution in four dimensions: genetic, epigenetic, behavioral, and symbolic variation in the history of life. MIT Press. Cambridge, MA. Müller, G. B., Newman, S. A., editors. 2003. Origination of organismal form: beyond the gene in developmental and evolutionary biology. MIT Press. Cambridge, MA. Pigliucci, M., Müller, G. B., editors. 2010. Evolution: the extended synthesis. MIT Press. Cambridge, MA. 7. Pigliucci, M., Müller, G. B. Elements of an extended evolutionary synthesis. In: Pigliucci, M., Müller, G. B., editors. 2010. Evolution: the extended synthesis. MIT Press. Cambridge, MA. pp. 3–17. Quotation from p. 17.

8. Rosen, C. 2004. Preaching eugenics: religious leaders and the American eugenics movement. Oxford University Press. New York.

Numbers, R. L. 1992. The creationists: the evolution of scientific creationism. Knopf.

New York. See especially pp. 222–223. Tinkle, W. J. 1967. Heredity: a study in science and the Bible. St. Thomas Press. Houston.

9. Wallace, A. R. 1909. [Letter to Archdall Reid.] In: Marchant, J. 1916. Alfred Russel Wallace: letters and reminiscences.

Harper & Brothers. New York. p. 340.

10. Charlesworth, B., Charlesworth D. 2009.

Darwin and genetics. Genetics 183:757–766.

Quotation from p. 764. Dobzhansky, T. 1973. Nothing in biology makes sense except in the light of evolution. The American Biology Teacher 35(3):125–129.

GeneWatch 39

Council for Responsible Genetics 5 Upland Road, Suite 3 Cambridge, MA 02140

GENEWATCH IS FREE

ON THE WEB - BUT YOU CAN STILL SUBSCRIBE TO RECEIVE PRINT ISSUES. ANNUAL PRINT SUBSCRIPTION RATES INDIVIDUAL: $35 NON - PROFIT: $50 LIBRARY: $70 CORPORATION: $100

(PROOF OF NON-PROFIT STATUS MAY BE REQUIRED)

All figures in US dollars. Future issues of GeneWatch will be exclusively electronic and free at www.councilforresponsiblegenetics.org.

If you wish to obtain a special print copy of a single issue, please send a request to the address below or call 617.868.0870.

PAYMENT INFORMATION Please send a subscription request with your full name, address and email address, along with a check or credit card (MasterCard or Visa) information, to: Council for Responsible Genetics 5 Upland Road, Suite 3 Cambridge, MA 02140

Orders are also accepted online (www.councilforresponsiblegenetics.org) and by phone (617.868.0870). Additional donations are welcome. Thank you!

IMPORTANT TAX INFORMATION: THE FAIR MARKET VALUE OF A ONEYEAR SUBSCRIPTION TO GENEWATCH IS $35.00

Support from people like you makes CRG’s work possible.

Much of our income comes from individuals.

Your support helps keep our programs free of the restrictions that come with funding from pharmaceutical and health care companies or government sources. We are the watchdogs for accurate and unbiased information about biotechnology, even when the truth doesn’t suit current political or commercial agendas.

And we depend on you to be able to do what we do.

There are many ways you can help CRG. You can become a donor: an annual gift in quarterly installments of $25, $50 or $100 gives us a wonderful and predictable support with a minimal shock to your budget. You may also be able to designate CRG through your workplace giving program, including the Combined Federal Campaign. Many companies will actually match or even double-match your donation. Check with your employer about its matching gift program. You might also consider making an investment in a future where biotechnology is properly used by remembering CRG in your will with a bequest or charitable trust gift.

To learn more about helping CRG, please call us at 617.868.0870. You may also write the Council for Responsible Genetics at 5 Upland Road, Suite 3, Cambridge MA 02140, or visit www.councilforresponsiblegenetics.org.

ISSN 0740-9737