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

Volume 26 Number 4 | Aug-oct 2013

ISSN 0740-9737

Sherine Hamdy on 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)

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American Museum of Natural History

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GeneWatchAugust-OctOber 2013VOlume 26 number 4

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

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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 “reli-gion” could refer to anything from Christianity to Islam to the field of genetics itself. Although taking on a topic as expansive as “religion + genetics” presents some behind-the-scenes challeng-es, I think it also produces a particularly accessible end product. I like to point out in this space when an issue of GeneWatch has “something for everyone,” and this time around 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 dis-cussed 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 non-Amish people comment on the Amish, from CNN to Weird Al Yankovic songs to, worst of all, reality TV). That led to an in-terview with Hal Cross [page 8], who, having worked on genetic disorders in the Amish community since the 1960s, would have to be considered the leading expert on the subject.

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

Editor’s Note Samuel W. anderSon

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

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

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

Continued on page 7

geneWAtch 3VOlume 26 number 4

GeneWatch Vol. 26 No. 4

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

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

11 Tell Me a Story: Genomics vs. Indigenous Origin Narratives Indigenous critics 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


universal: shared aspects of the hu-man genome.

But what?The most obvious possibility is a

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

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

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

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

A Viral Meme

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

No biologist—indeed, no well-educated and thoughtful person—can be in any doubt that human be-ings are the product of evolution by natural selection. Nonetheless, close attention to Homo sapiens reveals a number of evolutionary mysteries, aspects of our shared humanity that are almost certainly a result of “na-ture” (i.e., evolution by natural selec-tion), but whose precise evolution-ary causation is currently obscure. Among these mysteries of “human nature,” one of the more perplex-ing—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 con-siderable variability in religious prac-tices worldwide, which at least opens the possibility that the underlying causation is simply cultural tradition and social learning, which vary from place to place—as does, for example, human language. But even as culture and social learning obviously deter-mine the detail of what particular language is spoken by what particu-lar people, it is also true that all ‘nor-mal’ human beings end up speaking some sort of language; moreover, these languages typically share what linguists designate a “deep structure.” This basic pattern seems likely to ap-ply to religion, too. Thus, the simple fact that religion is what anthropolo-gists call a “cross-cultural universal” could suggest that it derives from another, underlying cross-cultural

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


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

Theory of Mind

Related to the Overshoot Hypoth-esis, but more specific, is one based on what psychologists call Theory of Mind (ToM). Basically, this is a comparatively advanced mental ca-pacity and one that has almost cer-tainly been adaptive: the ability to “mind read,” to create a mental map of what someone else is thinking, and therefore what they are likely to do. The next 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 obser-vant human beings to modify or pro-pitiate them.

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

The idea, in brief, is that human beings are especially prone to detect or imagine that these worldly agents are directed toward us. Sometimes they are, after all, and when this is the case, better safe than sorry. A rustling in the grass could be a field mouse or a poisonous snake. In such cases, better to assume that such stimuli are in fact aimed at us, since the consequence of being wrong could be serious. The result would then be a human penchant for wield-ing an array of Hyperactive Agent Detection Devices (HADD), which aren’t devices for the detection of hy-peractive agents but rather detection

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

Overshoot

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


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

A Role for Consciousness?

Another group-related payoff to religiosity might be connected to what appears to be the uniquely hu-man level of individual conscious-ness. As individuals evolved greater self-awareness (the adaptive value of which constitutes yet another evolu-tionary mystery, but one for which there are numerous hypotheses), they might well have become increas-ingly aware of the extent to which their personal, self-oriented incli-nations differ from what is optimal for the larger social group. As a re-sult, insofar as natural selection was somewhat driven by group selection, it is possible that religion, with its supra-individual norms, could have effectively imposed restraints and models that conscious 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 accru-ing to a small number of individuals

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

Group Coordination

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

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

The Big Brain Effect

Another consequence of having a big brain (which itself presumably evolved for a variety of possible rea-sons, including efficient communi-cation, planning, tool use, sophisti-cated mate selection, elaborate child care, etc.) could well have been a felt need to explain things, including some—such as death, questions of “meaning” in life, perplexing weath-er 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—ob-jectively valid or not—resulting in-evitably in religious beliefs.

Closely connected to the Big Brain Effect is the widespread and highly adaptive propensity of people, es-pecially when young, to learn from adults and others in authority. Af-ter all, a species with a lot to learn must be predisposed to accept in-struction. Thus, regardless of what actually generates religiosity among adults, once present it is likely to be avidly taken up by subsequent gen-erations. After all, adults have much of value to transmit to their offspring: what foods to eat and what to avoid, who is a friend and who an enemy, rules of social interaction as well as language itself. It is therefore no coincidence that children are over-whelmingly prone to adopting other traditions from their parents, includ-ing the 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


On the other hand, religious persua-sion can be a source of intolerance and violence, and no small amount of hypocrisy. However, it is one thing to ask whether, on balance, religions are morally beneficial, and something different to inquire whether they are biologically beneficial by virtue of their ethical teachings and the social confidence and 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 proceed-ed via group selection, which, in turn, might have favored those groups that were more violently cohesive dur-ing war and morally cohesive during peace. In my opinion, however, it is highly likely that natural selection, whether acting at the level of individ-uals or of groups, has been respon-sible for the existence as well as the perseverance of religion.

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

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

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

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

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

was never under the impression that there was any actual scientific “debate” about the merits of natu-ral selection, even when one of my junior high science teachers openly begrudged that they weren’t al-lowed 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 teach-ing of evolution and when even the science teacher seems uncertain about it, you can see how a lot of kids would be skeptical about the factuality of evolution.

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

Editor’s Note, continued from p. 2


it, of a group. This may be nomads in Saudi Arabia, it may be enclaves of families in India or China, but in this country those conditions are met primarily by Amish and also some Mennonite groups, in communities that tend to marry among themselves and admit very few “outside” people. So what you end up having is what we call a “founder effect.” Whenever a small group of individuals found a community, the descendants of these founders obviously carry these genes as well. So since there are relatively few founders, generally, that means if the founders had a recessive muta-tion and the group continues to inter-marry and doesn’t admit many out-side people, it increases the chances that a male and female, each with the same recessive mutation, will meet each other. This is what leads to au-tosomal recessive diseases.

From a genetics point of view, or a scientific point of view, this provides an opportunity to look for mecha-nisms of disease, to help us under-stand biochemical pathways and the nature of health and disease. 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 sce-nario, in very broad terms: The first Amish that immigrated settled in eastern Pennsylvania in the 18th cen-tury. There was another whole wave that came over in the 19th century, and they tended to skip over east-ern Pennsylvania and settle more in western Pennsylvania, and from there they settled in Ohio and Indi-ana, and in many other communities in other states. So it really doesn’t do a whole lot of good, say, for some-one 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 re-lated as well—the Indiana com-munity came from the same

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

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

Harold Cross: We’re specifically in-terested in autosomal recessive disor-ders. For this sort of disorder, one ge-netic mutation on one chromosome usually does not cause a 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 some-what related to them, or at least come from the same “founder,” as we call

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


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 in-dividual outside of Holmes County with this disease. So the chances of somebody coming from outside and contributing that mutation is pretty low, because it seems to be restricted to the Amish themselves.

But having a closed community also excludes other diseases. Take sickle cell anemia: As long as no one who carries that gene enters the Amish community, the Amish will not have sickle cell anemia. And there are many other conditions which the Amish 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 ben-efit to the communities. But how do you do that? Well, a lot of people are very grateful to know “this is a genet-ic defect—it wasn’t because I ate the wrong vitamins or vegetables or rode horses too much.” There are psy-chological benefits that come from knowing why your child is the way that he or she is.

But what you’d really like to do

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 progeni-tors of those second cousins them-selves are related in some way, and their parents are related, etc. The de-gree of relatedness is cumulative so couples are more closely related than a simple 3 or 4 generation pedigree would suggest.

So 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 meet-ing up with someone who has the same rare new mutation is pretty small. That’s why most of these re-cessive diseases are extremely rare, with the exception of an isolated community, where we can find, in some cases, a substantial number of individuals with the same problem.

And one of the things that main-tains that founder’s effect is that

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

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

While groups like the Amish can have a fairly high number

people who founded the Ohio com-munity. The eastern Pennsylvania Old Order Amish seem to be geneti-cally somewhat different. They have different surnames, different blood groups, and to some extent different diseases. But for most of the rest of the Amish, it really doesn’t do much good to move to another communi-ty, 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 mar-rying first cousins, so they certainly check that out. Some of them might know they might be second cousins, but for third and fourth cousins, they don’t usually check that far back. The information is freely available, there


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 es-sentially 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 of-ten 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 dis-covered, about 7 or 8 years ago, a new mutation that causes hypertro-phic cardiomyopathy, a heart condi-tion which can cause sudden death at any age. We found the mutation that causes it, and we began testing for that. In adults, 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 indi-viduals who carry the mutation, be-cause 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 un-til we had people coming out of the woodwork asking to be tested. Peo-ple are very tuned into heart disease, so this has really resonated in the community.

As a general rule, Amish are very interested in knowing about their genes and the diseases that they cause, and now that we’ve been work-ing 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 be-cause people want to meet us. nnn

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

Now, ultimately, I don’t want to change the Amish. It’s not my busi-ness, and we shouldn’t interfere with them. But I do think that knowledge is power. We offer free testing to any-one who wants it, and there are some parents who say they want their chil-dren tested. Now, what you do with that information is another 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 promot-ing any of this—but if we can make information available about trans-mission of diseases and basic genet-ics, then hopefully the population will use that to their benefit. But 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 ac-ceptable thing to do, or is it against their Ordnung. And it’s really inter-esting—I thought there would be a more uniform opinion, but there re-ally 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 infor-mation is out there, what tests can be done, and obviously it’s up their own

is reduce the number of individu-als born with severe developmental regression or neuro-degenerative diseases. This can be complicated sometimes because of Amish reli-gious teachings. For example, we could do in utero testing, but it 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 knowl-edgeable about some of these things, and they avail themselves of comput-ers. You ought to see the numbers of horse and buggies tied up outside the county libraries! And you go in there, and there are all these Amish young men and women on the computers, looking up stuff. So 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 de-cide whether they want to risk it. So we can do that, we can certainly do premarital and later testing to deter-mine whether each parent carries a gene. It’s not unlike the big push now among Ashkenazi Jews, encouraging young people to come in before they have kids and get anonymously test-ed. They 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


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

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

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

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

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

Tell Me a Story: Genomics vs. Indigenous Origin Narratives Indigenous critics 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 originsBy Kim tallBear


detail from Dakota Sioux Winter Count, 1890/1900


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

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

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

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

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

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

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

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

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

doubt impedes one’s ability to truly grasp indigenous analyses.


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

Indigenous peoples do not expect scientists to adopt their stories of origin. Theirs are not generally pros-elytizing traditions. But 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 ge-nome research is that it is presented as global and anti-racist,5 but has advanced historically by violating subjects’ rights to self-governance, by appropriating their biological re-sources, and sometimes even their cultural narratives, and by de-valu-ing the truths and powerful values of those it seeks to include and connect. nnn

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

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

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

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

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

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

Native American and Christian

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


child with strong bones.Such a guarantee was appealing,

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

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

In American Christianity, the Ro-man Catholic Church stands alone as having addressed the ethics of repro-ductive technologies—from contra-ception 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 theo-logian specializing in sexual ethics. He introduced me to the essential

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

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

While many of my Catholic 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 press-ing practical concerns (such as mon-ey) 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

During her third summer of life, my oldest daughter had three bro-ken 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 simultane-ously devastated and oddly relieved. I no longer had to wonder when my fragile girl would start breaking.

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

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

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


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

I know, from the most strenu-ous sort of experience, that life with a broken body can be rich, full, and happy. I also know that little girls should not break their legs falling off a 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 old-est daughter did not, even as I cannot imagine her being anyone other than the smart, lovely young woman she is becoming, and know that having OI has shaped her.

Since making our childbearing choices, I have told my story to all sorts of audiences, particularly to Christian ones. My husband and I were almost completely alone with the choices we made, not because our Christian friends and pastors 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 poten-tial—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, be-cause I don’t know what the right an-swers are. I do not know whether the choices we made were good or bad, right or wrong. We have the children we 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, Par-enthood, and Faith in an Age of Ad-vanced Reproduction. She blogs about faith, disability, parenting, and ethics for Patheos, a web portal dedicated to reli-gion and spirituality.

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

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

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

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

am a lifelong Episcopalian who took a detour of about a decade into evan-gelical and nontraditional progres-sive churches. As I discovered while contemplating PGD, Protestant re-productive ethics are practically non-existent, from a practical standpoint. Protestant theologians and ethicists have written extensively on issues such as prenatal testing and assisted reproduction, but they have largely done so in dense academic language. Such language is off-putting to a lay-person like me, not only because it is hard to understand, but also because such language speaks largely to the head, not the heart. And when we are talking about 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 com-ment boards), many Protestants tend to focus overly on abortion, trying to transfer their pro-life or pro-choice views directly to other reproduc-tive concerns. Decades of divisive, oversimplified debate around abor-tion have left Christians ill-equipped to engage in effective discourse and empathetic counsel around repro-ductive technologies such as IVF, prenatal testing, and PGD. They of-ten fall back on well-worn abortion arguments around the appropriate limits on freedom of choice and the moral status of embryos, for example, which are relevant but incomplete.

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


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

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

For a lot of Western observers, Is-lam—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 re-sponses 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 Mus-lim 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 precau-tions. What they’re not looking at is whether people have access to trust-worthy and quality healthcare, and why poor people in particular would be distrustful of medical intervention because of past negative experiences with it. Those structural questions about access to good quality care are often covered over by this narrative of fatalism.

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

A fatwa is, by definition, a response to a question. In the Sunni Muslim world, those are nonbinding opin-ions, more like advice to the per-son asking the question. At least in Egypt—where I’ve done most of my research—with the advent of mod-ern nation states, there’s this ten-sion where the political rulers want

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

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

Sherine Hamdy: That’s an open question. There are two big compet-ing narratives in the Muslim world: One is that Muslims should have their own bioethics, and mostly that would be gleaned from the Muslim jurists who issue fatwas in response to questions that people might ask about a specific medical procedure or technology. But the critique of that is: “Why are we just looking at legal scholars? Don’t we have this much richer tradition that includes literature and ethics?” And just be-cause of the post-colonial structures of many Muslim countries, it turns out that the Islamic legal voices are one of the ones that remain, to the detriment of other traditions. So 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, univer-sal—so shouldn’t we have a bioethics that has developed in tandem with medicine?”

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


“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 re-ally interesting story.

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

Muslim majority?

There has been a lot of interest among Muslim minorities in Western coun-tries who are wondering “is this sort of procedure OK according to my beliefs?” Whereas, in my experience, 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 pre-natal genetic screening in the U.S., which has become widely available for pregnant women who are iden-tified as high risk, despite the high cost. In Egypt, usually it’s only after a person has already had a child with a significant genetic disease that pre-natal genetic screening is offered to the patient.

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

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

For example, where an expectant mother has been diagnosed with car-rying a child with a defect or disease, and she’s struggling with that deci-sion about whether to terminate the pregnancy or carry on— in almost all the cases I saw, those women already had an affected child in the family. The question was “can I have another one?” It wasn’t “can I have a life as the mother of a disabled child?”

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

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

What are the implications for some-body who doesn’t follow a fatwa?

It depends. For example, with organ transplantation, which is studied a lot, the legislators in Egypt were de-bating for a long time: “Are we go-ing to allow the harvesting of organs from patients who 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 leg-islators 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 encour-age 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-appoint-ed 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 conse-quence 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


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

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

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

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

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

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

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

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

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

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

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


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

lecular 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 exten-sion of causal axioms from purely molecular to higher-level emergent traits, such as complex morphological or be-havioral organization of organisms. This can lead to what we believe are highly misleading and mistaken arguments of direct causation from

genomic measures to specific emer-gent outcomes, such as predicting late-onset human disease from an 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

and characteristics so much ‘above’ the level of electrons, such as inter-actions among components of huge scale relative to individual electrons, that this compatibility doesn’t help much, and we need other sorts of ex-planations (and theories) to ‘explain’ a building or predict its properties. In this sense, higher-level or ‘emer-

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

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

and chemistry have many unknown issues, but much that they do seems rather rigorously true in this sense. Atomic theory gives very good un-derstanding of much that chemists do, or of the nature of stars. The the-ory’s axioms are assumed to be uni-versally, that is cosmically, true, and the evidence seems to support that. In this sense science is a purely ideological view of the world. However, when used in appropriate ways, the theory works, and we usually don’t ap-ply the negative nuances of the word ‘ideology’ to it, nor do we call it even metaphorically a ‘reli-gion.’ Still, we must ac-cept a couple of impor-tant caveats.

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

However, while the properties of the building 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


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

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

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

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

that the prediction is valid.Our collective knowledge of these

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

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

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

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Introduction

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

Religion and Genetics:

An Inextricable

Link

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

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

To test, or not to test

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

Images: S. W

. Anderson


BRCA1 or BRCA2 genes, religiosity is likely to impact if and how a person finds hope or acceptance. Different contexts, goals, fears, and levels of self-determination inevitably lead to variation in how one copes with new-born genetic screening results versus results for an adult onset genetic condition or cancer. However, the degree to which religious beliefs im-pact a 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 per-sonal faith and conflicts in their pro-fession affect patient care? Research has demonstrated that genetic coun-selors report lower levels of religi-osity than the general population.7 Cragun, Woltanski, and Myers et al. speculate that this may positively in-fluence regard for patient autonomy and tolerance, but they note that more research is necessary to deter-mine the causation and significance of this difference. Alternatively, low-er levels of religiosity could result in less familiarity with or sensitivity to religious perspectives. If consider-ation of religion is another aspect of cultural competency, professionals in genetics must be aware of how their own religious perspectives may influ-ence interaction with patients.

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

capacities, the health of family mem-bers and 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, on-set or progression of disease be-cause genetic conditions often vary in presentation. When a genetic re-sult presents in the form of a risk, or probability, a person frames the risk using their own experience or values to give it subjective meaning.6 Deci-

sions can be influenced by personal experience with disease, family dy-namics, and social contexts. Depend-ing on 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 dis-ease, or a high cancer risk due to an identified deleterious mutation in the

indicate a negative correlation be-tween attitudes toward genetic test-ing and religious involvement.4 Vir-ginia L. Bartlett, Assistant Director of the Center for Healthcare Ethics at Cedars-Sinai Medical Center writes, “Religious affiliation or faith can af-fect whether one sees the use of ge-netic testing as a scientific tool, as an illustration of God’s creation, or as an unwarranted human intervention…”5

The decision of whether or not to order genetic testing can be over-whelming because of both the medi-cal and moral implications. Advanc-ing maternal age and greater access to prenatal care has resulted in more women facing decisions about pre-natal genetic testing. How do pa-tients reconcile their medical deci-sions with religious traditions, such as Catholicism, that prohibit pre-natal testing if undertaken with the intention to terminate a pregnancy with a genetic abnormality? Does re-productive genetic technology effect conceptualizations of parenthood and procreation? What are the impli-cations of the use of this technology to various religions that emphasize the importance of kinship and lin-eage? How do religious themes of “Creation” or “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 associa-tion of genetic variants with pheno-typic outcomes in the population has improved the utility of genetic test-ing. The results of a genetic test can have implications for reproductive

Depending on one’s religious

standpoint, a diagnosis

could be seen as a curse, a

punishment, or even opportunity

to experience meaningful suffering.


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

Need for research

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

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

as Rebecca Anderson, attorney and genetic counselor, notes, in a medical setting “patients may assume these topics are ‘off limits.’”12 Significant factors that were found to influence the performance of religious assess-ment were the genetic counselor’s comfort with and perceived relevance of the religious assessment itself.13 A clearer understanding of what to ad-dress, when and why would improve the ability of professionals to navi-gate 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 pro-viding unbiased information about genetic technologies, surveyed 1,211 respondents from the general public about reproductive genetic technolo-gy (in-vitro fertilization, pre-implan-tation 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 is-sues in the realm of health and safety view genetic technology more favor-ably 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 re-ligiously orientated, with Democrats and Independents favoring the for-mer. However, support for govern-ment regulation of genetic testing was politically bipartisan. How will

The development of a religious as-sessment tool that is geared toward medical genetics could be advanta-geous. For example, we have devel-oped a mnemonic device that guides genetics professionals through reli-gious 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 mean-ing to a positive result or a neg-ative 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 dis-ease 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 sup-

port 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 pi-loted to determine efficacy. Inviting this discussion is important because,


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

with religious and genetic commit-ments 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 set-tings. Arriving at shared decisions in health care is difficult work requiring skill and effort to manage different perspectives. This process is espe-cially challenging when clinicians’ technical expertise is hard to grasp

and when patients or their fam-ily have complex psychosocial situ-ations that clinicians do not under-stand or endorse. Clinical situations

always bring particular configu-rations 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. Nam-ing and understanding these so-cial patterns can help overcome the collective anxiety they often produce.

Richard Rorty once called religion a “conversation stop-per.”3 When people realize a di-vergence in religious practice, whether at a dinner party or in an examination room, they often will start talking about some-thing else. The norm is to halt religious lines of conversation at the first sight of difference. In

the U.S. context, curiosity about re-ligious/spiritual differences is stifled for a multitude of reasons, many of which can be traced back to political guarantees of religious liberty under-written by religion’s restricted role in the public square. When patients/families raise religious concerns dur-ing ethics consultations, I observe clinicians reluctant to ask questions about how the patient/family’s reli-gious practices apply to this medi-cal situation. When I ask providers

In a recent issue of Pediatrics, a girl, diagnosed prenatally with triso-my 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 ex-clude considerations of the child’s genetic profile:

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 con-sciences of those who would be caring for our daughter (and lov-ing 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, fe-tal medicine and cardiac teams had different professional opin-ions 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 stake-holders generate real differences that can be attributed to the prac-tices of clinical genetics and religion. How are differences that emerge from these activities resolved? Some would argue that scientific and reli-gious worldviews are incommensu-rable, lacking the common resources

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


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 stake-holder 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 demon-strate how shared decisions do not require sharing a religion but allow for religion to be genuinely engaged.

1. Shared deci-sion making de-pends on the qual-ity of the therapeutic relationship.

Relationships in healthcare are the conduits through which all care is pro-vided. Whether the clinical information is strong or weak, the treatment options clear or ambiguous, the deliberation takes place within an inter-personal space where the quality of the en-gagement either sup-

ports or undermines the trust and respect needed to make health care decisions. A successful shared deci-sion making relationship does not embody respect through a simple equality that presumes to distrib-ute authority evenly. Instead, shared decision making should seek what Michael Walzer has called “complex equality,” where authority is distrib-uted 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

suspicion of genetics. Let’s look at how these cultural

norms might intersect in the situa-tion described in the opening para-graph. Imagine listening in on the first care conference about the girl with trisomy 18. The parents are us-ing the word “baby” and the clinicians are describing her as a “fetus.” These distinct references do not stop the conversation; to the contrary, com-munication skills have been honed to gloss over such terminological differ-ences. Nonetheless, the word varia-tion marks a potentially important

divide. For these parents, the mean-ing of “baby” might be linked to an unqualified religious commitment to sustain human life at all costs, where-as for the providers, “fetus,” depend-ing 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 nega-tive health effects including its high mortality rate and limited treatment

about their hesitation, a common response is that they want to keep a clean boundary between their medi-cal authority and the autonomy of the patient/family’s religious practice. Below I propose that shared decision making requires navigating and ne-gotiating between perspectives while being respectful of boundaries.

A person’s genetic inheritance is deeply personal, inescapably politi-cal, 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 cen-tral role in my being.” These messages about genetic identity are in-extricably tied to his-torical lessons about eugenics. We must all be vigilant against the temptation to draw lines rashly between acceptable and unac-ceptable genotypes. Such discrimi-nation in the name of genetic “ad-vancement” usurps, according to some, a supra-human authority.4 And geneticists have fed religious con-cerns by appropriating religious lan-guage 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


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 ben-efits of living, what all parties agreed would be, a very short life. The par-ents would only agree to withdraw-ing life-sustaining treatment at birth if the chance of death from heart surgery was 100%. We now see a po-tentially 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 initi-ate interventions to attain greater postnatal certainty about the car-diac lesion.”12 The parents’ religious understanding of a longer-term benefit—unqualified extension of life—was given deference by permit-ting this benefit to justify a high-risk surgery if survival were deemed pos-sible. Perhaps the medical perspec-tive on the longer-term benefits of treatment could have been given more weight; regardless, this exam-ple 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 Bio-medical Ethics and Society.

parents and healthcare teams delib-erate about what to do, they speak and listen in effort to share their per-spectives. Navigation begins with of-fering information and substituting words that allow the respective stake-holders to specify the set of concerns from their point of view. Think about the health care team (fetus, patient) and the parents (baby, daughter) sub-stituting one term for another when referring to the same ultrasound im-age. 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 de-fect, should not be immediately clas-sified 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 se-lecting treatment offerings. But what does this request mean? The parents continue, “Each case should be con-sidered individually for the medical challenges it represents, and if inter-vention can result in the extension of life, all medically indicated treat-ment options should be offered, with final decisions left to the families in-volved.”11 On this view, the extension of life without qualification is a pro-portionate benefit to any burden or harm this child may undergo in treat-ment. The parents have a religious obligation to endorse any action that will extend human life. The health-care providers have a professional obligation to avoid harming patients and to act only with a reasonable

because clinicians and parents/pa-tients are both entitled to have opin-ions 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 disagree-ments can occur in a space of com-passion that informs decisions about whether cooperation is possible.

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

This seemingly simple target is re-markable for what it does not seek to achieve. Mutual understanding com-plete with common principles or be-liefs 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 togeth-er. Aligning perspectives completely is an impossible goal but aligning stakeholder commitments around realistic options is often achievable.

3. The primary task in shared de-cision 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


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

Who is a Jew is a complex ques-tion, 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 citi-zenship 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 in-dividuals, including Vietnamese boat people and migrant workers from the developing world, but it is Israel’s Law of Return that engages particu-lar attention.

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

that recognize a “right of return,” pro-viding a special track to citizenship for individuals with an ethnic and/or ancestral connection. For histori-cal 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 el-igible for Israeli citizenship. The Nazi rule was that any person with one Jewish grandparent was a Jew and targeted for extermination. There-fore, Israel admits to citizenship indi-viduals with one Jewish grandparent, even when the individual in question would not be recognized as a Jew un-der rabbinic law. Israel has given citi-zenship to about 300,000 immigrants from the former Soviet Union in this category, including some who regard themselves as religiously Christian

Perhaps the most interesting as-pect of the relationship between ge-netics 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 possibil-ity 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 asser-tions that the Pashtun of the Hindu Kush descend from the lost tribes were revived by the notion that high frequencies among them of Y-chro-mosome haplogroups R1a1a-M198 and the presence of G2c-M377 may signal a link with ancient Jews.6 There was international press cov-erage 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 hap-lotype common among the cohanim, the Jewish priests said to be descen-dants of the biblical Aaron, Moses’ brother.7 But even if DNA could tell us that the ancestors of the Pashtun,

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

Images: S. W

. Anderson


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

Several studies of the genetics of Ethiopian Jews have shown the Beta Israel to be more similar to non-Jewish Ethiopians than to other Jew-ish communities.9 They do have Y-chromosome haplotypes Med and YAP+ 4S, common in Jewish popu-lations, 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 sub-ordinated genetic evidence to more traditional approaches is thus par-ticularly 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.

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 ex-plain 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 au-thorities have been intermittently aware of the existence of Ethiopian Jews. In the early 1500s, the ques-tion of the Jewish status of an Ethi-opian 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 con-sidered the problem since, expressed concern about the absence of rab-binic law in Ethiopia; for example, since the Ethiopians did not have for-mal conversion procedures, the Jew-ish status of the descendants of con-verts 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 de-scendants of Dan, lost in the Assyr-ian 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 Jew-ishness of a group that not only looked different from other Jews, but was unaware of so much Jewish

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

Which brings us to the “lost tribes.” Unlike the majority of Israe-lis, the self-described Bnei Menashe of eastern India are observant of Jew-ish law. They say that their ancestors, the Tribe of Manasseh, wandered so long that they lost knowledge of He-brew 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 in-cidence of mitochondrial (i.e., mater-nal) 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 un-dergo conversion in rabbinic courts, which inquire into their sincerity as converts, not whether there is ge-netic proof of Jewish ancestry. The Jewish commitment of the Bnei Me-nashe has impressed rabbinic courts; over 2,000 have converted and im-migrated to Israel. Many of the esti-mated 7,000 remaining in India are expected to do likewise.

The Ethiopian Jews, Beta Israel, by contrast, have a centuries’ long his-tory of living as Jews, although de-tailed descriptions date only to the 19th century. They knew no Hebrew and had no rabbis, but they had par-tial Bibles and followed Biblical law carefully, observing not only the Sab-bath but also laws such as the sacri-fice of a Pascal lamb before Passover that other Jews had ceased to follow after the destruction of the Temple in


At bottom, creationism is the rejection of evolution, the idea of common descent, and allied sci-entific principles in favor of super-natural 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 insuf-ficient; it’s necessary also to reject evolution.) As such, creationism comes in different varieties, depend-ing on differences in the supernatu-ral creation account offered. The most familiar forms of creationism are based on the Christian Bible, but Jewish, Islamic, Hindu, and even Na-tive American and New Age forms are to be found. Within Christian creationism, the main division is be-tween young-earth creationists, who hold that the world is merely thou-sands of years old and tend to accept Noah’s Flood as historical and world-wide, and old-earth creationists, who accept the scientifically ascertained age of the earth and tend to reject the universality of Noah’s Flood. Intelli-gent 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 constitu-tional law: by remaining silent about the identity of the designer, its pro-ponents hoped for proposals to teach generic creationism in the public schools to survive judicial scrutiny.2

Historically, three goals have char-acterized the creationist movement

in the United States: banning the teaching of evolution; balancing the teaching of evolution with the teach-ing of the supposed alternatives of biblical creationism, creation sci-ence, or intelligent design; and belit-tling evolution as “just a theory” or as “controversial.” Banning the teach-ing of evolution was popular dur-ing 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 alter-native faltered with court decisions, biblical creationism in 1975, creation science in 1982 and 1987, and intel-ligent 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 mis-represent evolution as controversial. Throughout, three rhetorical themes have been constant: that evolution is bad science; that teaching evolu-tion is connected to religious, moral, and social problems; and that alter-natives 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 cre-ationism over evolution comes in

Genetics is satisfyingly concrete. The genotypes rolling inexorably from the Punnett square; the mil-lions 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 un-imaginable eons, with infinitesimal changes eventually amounting to important differences. The result is a tree of life that challenges plausi-bility: 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 commonsensi-cal about evolution. Moreover, evo-lution and genetics are “two very closely interwoven disciplines,” as the Genetics Society of America ob-serves, so it is difficult to disentangle the two from each other or from the fabric of biology as a whole.1 Still, re-lying on a general trust in genetics and a general ignorance of, skepti-cism about, or hostility toward evo-lution, creationists regularly attempt to misrepresent genetics—whether the population genetics of the middle twentieth century, the molecular ge-netics of the late twentieth century, or the genomics of the early twenty-first century—as posing a problem for evolution.

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


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

Even though creationists are fond of citing the failure of Charles Dar-win’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 be-tween the dominant theories of evo-lution and the dominant theories of genetics. Most famous is the clash between Mendelians and biometri-cians, which began to be reconciled by the foundation of population ge-netics by J. B. S. Haldane, Ronald Fisher, and Sewall Wright, and was finally resolved by the establishment of the Modern Synthesis by Theodo-sius 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 Charles-worth about the “value of the ongoing interaction between genetics and the study of evolution”—and with the ge-neticist Theodosius Dobzhansky that “nothing in biology makes sense ex-cept in the light of evolution.”10 nnn

Glenn Branch is Deputy Director of the National Center for Science Education.

commenter stated there are non-re-ligious objections to evolution, and cited […] Moeller [sic] and Newman, epigenetics, the work of the Alten-berg 16, […] and others.”5 The com-menter was apparently referring to scientific work seeking to incorpo-rate 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 sci-entists 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 ca-pacity 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 popula-tion. Tainted by its coercive imple-mentation, particularly in Nazi Ger-many, eugenics has a bad odor today, and creationists are eager to blame its historical excesses on evolution. But eugenics is historically and con-ceptually 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 extra-scientific 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. Tin-kle.8 Moreover, eugenics in its hey-day was based on a variety of claims

versions ranging from the silly to the sophisticated. At the silly end of the spectrum is the notion that evo-lution is debunked by the fact that organisms as different as the opos-sum and the giant sequoia have the same number of chromosomes. Mis-conceptions about mutations—that they are rare; that they are inevitably detrimental; that they are incapable of producing novel features, even when repeatedly winnowed by selec-tion—are ensconced in the creation-ist 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 be-speaks design. These claims have been challenged in the scientific lit-erature as involving a dubious notion of functionality.4 But whether or not the claims survive scientific scru-tiny, the creationist inference to de-sign—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 ser-vice 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 Na-tional Research Council, the stan-dards treat evolution as a unifying idea of the life sciences. According to a summary of the comments, “A


working terminology for the un-knowable, 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 sci-ence go. It is the idea, the mecha-nism, the insight that justifies all the rest of the work of science. The mo-ment 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 scien-tific insight come from? Surely from someplace currently unknown. Let us consider the possibility that scien-tific insight, like religious revelation, comes from an intrinsically unknow-able place.

It is a safe bet that working sci-entists 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 sci-ence 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 every-thing, and that the unknown itself is wholly bounded, blurring into an intrinsically inaccessible and immea-surable unknowability.

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

except the unknowable. The enter-prise 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 worldwide human experience out-side of science. More to the point to-day, they are, as well, consistent with the actual experience of scientists, if not the institutional ideology of or-ganized 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 un-knowable, no problem. The problem with that glib answer is that science itself depends on the periodic emer-gence 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 sci-entific 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

The question “Can faith broaden reason?” is of such great intrinsic im-portance, 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 scientifically-minded. Science works at the bound-ary 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 anato-mize the unmeasurable. I have cho-sen to work at this boundary never-theless, because I have the habits of thought of a scientist.

As soon as the notion of the un-knowable as distinct from the un-known placed itself before me, the shock changed both my career and the way I see the world. The un-known 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 pres-ents a problem: scientific hypotheses about the unknowable are by defini-tion 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

Can Faith Broaden Reason?A biologist reflects on his religious life.By roBert PollaCK


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 reli-gious 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 mean-ing 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 immer-sion in the study of what has been dragged out of the unknown by her predecessors, a person adept at reli-gious insight – a holy person, a pro-phetic 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 un-known is vast, most religions are far more comfortable with the notion of a residue of unknowability than are most sciences. Many practicing sci-entists instead believe – they would say they know – that what is not known today must and will be known

By meaning, in this context, I mean a new understanding drawn from the internal, emotional content of the ex-perience, not the intellectual under-standing which may follow as it does when experimentation proves a sci-entific insight to be useful. Meaning, purpose, teleology, the end of things: these are not notions that we natu-rally 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 unknow-able 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 dif-ference between insight and revela-tion. Whether prepared for or not, prophetic experiences and scientific insights will occur with similar rar-ity, irrationality and unpredictability. The real differences grow from the different uses made of scientific and revelatory insight.

was even a question to ask.The unknowable is worth a scien-

tist’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 har-nessed 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 tro-phies of a struggle with the unknown.

The essence of the disprovable is reproducibility; insight is by defini-tion 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 confirma-tion of what is already known.

Scientific insight is not the only example of such a gift from the un-knowable. Other events — also oc-curring rarely, inexplicably, unpre-dictably – can give meaning to our lives, just as scientific insights can explain the world outside ourselves.


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 reli-gious feelings in an academic setting particularly tricky. Scientists and others who use their powers of re-pression to avoid accepting the real-ity of religious feeling or even its ori-gin 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 – emotion-al 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 condi-tions; 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 feel-ing 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

really accept that anyone could be-lieve in a way around mortality, and though many religious persons can-not 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 Mo-ment I concluded that current sci-entific studies of the brain and the mind required us to acknowledge that science has an irrational com-ponent, and that scientists are likely to experience this irrationality as the same waves of awe, joy, fear or won-der that can overtake a religious per-son, 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 artifi-cial, unnecessary one, built on denial of the reality that their own work de-pends upon uncontrollable and un-predictable moments of insight. The same artificial barrier is maintained from the other side with equal futil-ity, each time the resultant discover-ies 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 re-ligious faith.

To dismantle the wall from both sides, both camps will have to admit what they must already know: the re-ality 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 orga-nized religion depend. Such admis-sions will not come easily. Characters

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

The notion that nothing exists ex-cept what is knowable is wholly un-provable. Holding on to this belief in the absence of any way to test it through experimentation, and de-spite the counter-evidence of scien-tific insight itself, puts science at the risk of trapping itself in dogma. Like the worst of religious dogmas, the in-sistence that everything is knowable, is an unprovable position taken in the face of the evidence of the natu-ral 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 ex-periments assures that science as an enterprise can always be brought to internal consistency, while religions, free to call upon individual revela-tion and unreproducible, miraculous events, necessarily fall into contra-diction with one another and thereby cancel any reason for a sensible per-son to take any of them as seriously.

In a negative template of this posi-tion, many people of faith will argue that science is a fragmented enter-prise unable to paint a coherent pic-ture of the natural world, limited by conflicting and inconsistent models and the finite limits of a mortal mind.

Though many scientists cannot

Images: S. W

. Anderson


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 La-ity Concerned” at Riverside Church:

“We must rapidly begin...we must rapidly begin the shift from a thing- oriented society to a person-oriented society. When machines and com-puters, profit motives and property rights, are considered more impor-tant 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 fair-ness 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 fling-ing a coin to a beggar. It comes to see that an edifice which produces beg-gars needs restructuring.” nnn

Note: This paper is adapted from my book The Faith of Biology and the Biol-ogy of Faith, published by Columbia University Press in 2000, and re-is-sued in paperback in 2013. It was pre-sented as a talk to Communion and Liberation in 2008.

Robert Pollack, PhD, is Professor of Bio-logical Sciences, Earth Institute Professor, Adjunct Professor of Religion, Lecturer in Psychiatry at the Center for Psychoana-lytic Training and Research, and Direc-tor of the Earth Institute’s Center for the Study of Science and Religion, all at Columbia University; and Adjunct Pro-fessor of Science and Religion at Union Theological Seminary.

in their high regard for the critical step of insight in science — vali-dates meaning and purpose in a liv-ing world which is the product of the uncaring, ever-changing, always-im-perfect processes of natural selection.

This line of argument is articu-lated 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 mat-ters. 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 re-ality of free will that allows us to act well — or not. That choice – avail-able not just to Jews but to all people as their birthright – makes us all the active determiners of our fate. Pain, suffering, unreasonable maldistribu-tion of good and bad fate: these are the very stuff of the natural world, the visible expression of the random genetic variation which provides nat-ural 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 ques-tion before us in concrete and cur-rent terms, I argue that scientists of faith have the obligation to “broaden reason” by working together to as-sure that their science is put to the amelioration of injustice, and to the creation and protection of those

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 calculat-ed 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 meaning-ful – 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 ran-domness, 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 pre-determining 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 selec-tion which yield a person who can make the unexpected choice into the background.

This set of unprovable assump-tions — so bizarre in their distance from anything reproducibly known through science and yet so familiar


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 advo-cate for public health and safety in the biotech arena.

I am still amazed today that Pfiz-er’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 eco-nomic and political relationships were their most powerful advocate

against me and against public health and safety.

For example, the Yale University Occupational Health Division, with-out any substantiation to back up their claims, sent a letter to my doc-tor 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 con-firmed that the virus could infect hu-mans and was designed to attack hu-man 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 appoint-ment at the Neurology Department at Columbia University with a specif-ic physician and researcher who was

This is the story of a whistleblower: me.

I was working as a molecular bi-ologist at a Pfizer laboratory. After I raised concerns about worker safety at the lab, I was told to stop docu-menting the problems I saw; when I continued to raise concerns, another employee was assigned to work on a dangerous genetically engineered vi-rus on my bench without my knowl-edge; when I became ill and request-ed 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 informa-tion about the virus. And when I be-gan 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 govern-ment agencies to academia to the le-gal system—have conflicts of interest

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


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 state-ments, the Department of Public Health dismissed my case regarding serious biocontainment and safety is-sues at Pfizer.

Government agencies have their own incentives to protect Pfizer. In my case, egregious conflicts of inter-est were plainly evident at OSHA, the agency responsible to protect worker’s safety rights and whistle-blower 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 ap-pointed Assistant Secretary of Labor. This put him in the position to deny my OSHA appeals outright, even af-ter Senator Dodd called to his atten-tion several OSHA procedural errors and injustices done in my case.

In fact, my entire OSHA inves-tigation was a sham. My OSHA

see the second doctor and had filed a complaint against him for his un-professional behavior, Pfizer be-came 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 expo-sure and illness.

The facts are that Columbia Uni-versity and their Neurology depart-ment have received millions of dol-lars 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, act-ing as an independent expert dur-ing a state investigation of my case, concluded that the genetically en-gineered 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

an expert on genetically engineered lentiviruses, the same virus type that I had been exposed to at Pfizer. I was suffering immensely from the neu-rological 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 dan-gers associated with exposures to ge-netically 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 ap-pointment to see this lentivirus ex-pert at Columbia, I was in for a big disappointment. Columbia Uni-versity did a doctor switch on me. Instead of the expert, another phy-sician 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 “ma-lingering” and suggested that I be ad-mitted to a psychiatric ward.

I had been set up. Although I had never agreed to


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 Bry-ant refused my attorney’s attempt to admit documented and scientific evi-dence 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 len-tiviruses created at Pfizer. Nor would she allow evidence of Pfizer’s mis-use of these technologies or Pfizer’s blatant continued retaliation against me after I fell ill from the exposure to the lentivirus. She would not al-low 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 whistle-blower 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 re-garding safety matters of public con-cern. They awarded me $1.37 million

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’ compensa-tion administrative judge was visibly uncomfortable when he entered the room to find four Pfizer attorneys. He ruled that day that worker’s com-pensation had no jurisdiction to or-der Pfizer to provide my exposure records to inform my health care. As a result, I did not receive any work-ers’ 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 ad-ministrative judges are political ap-pointees, 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 will-ful 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 expo-sure 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

investigator stole my attorney client privileged documents which, subse-quently, 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 ex-posure. This ruling established a worrisome legal precedent. It poses egregious human rights issues, in-hibiting 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 document-ed evidence that Pfizer management had refused us remedy to serious bio-containment 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 road-blocks at every turn—even when I applied for workers’ compensation. Workers’ Compensation is a state-in-dependently run medical care system to which injured workers are mandat-ed to proceed to obtain medical care for an occupational injury or illness. Through this system injured workers are supposed to receive swift and ef-ficient medical care for their injury without the need for litigation. In ex-change for these benefits, American workers lose most of their rights to file a lawsuit against an employer be-cause of their injury at work.

Yet in my first workers’


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

Despite showing a gross and ma-licious disregard for free speech and worker safety, corporations like Pfiz-er have an overbearing scope of in-fluence 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 op-erate against the public’s trust, mak-ing 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 gov-ernment agencies and other power structures to stop any and all whistle-blowers. 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, Con-necticut. She is currently a member of the Board of Directors for the Alliance for Humane Biotechnology.

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 man-agement 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 safe-ty 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 con-straints 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 con-tinued for two years while we await-ed the appeals decision. The pressure to settle was still upon us. My hus-band was even prevented from per-forming his normal duties of drug and pharmacy inspections at a vital time when companies needed criti-cal 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

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 in-vestigations, character assassinations and suffered a horrible illness be-cause 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 her-self from my case after I won at trial. Her husband, an investment profes-sional, had direct monetary and em-ployment 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 jus-tice was delayed for almost another three years.

Nevertheless, the federal appel-late level is where Pfizer finally hit a brick wall. Pfizer’s “influence” to de-lay 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 retali-ated against me with willful and wanton intent. Pfizer was out of ap-peal 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 ap-pellate court level, my trials are not


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 popula-tion of India. Genome Biol. 6:PI, avail-able 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 hap-lotypes. 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. creation-ism: 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 im-mortality of television sets: “function” in the human genome according to the evolution-free 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/pub-lic/Meeting/Attachments/DisplayAttachment.aspx?AttachmentID=178938>. Quotation from p. 113.

6. Lamb, M. J., Jablonka, E. 2005. Evolution in four dimensions: genetic, epigenetic, behav-ioral, 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 move-ment. 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.

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 Conversation-stopper” 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 matri-lineal 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 found-ers: 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 hap-lotypes. Proc Nat Acad Sci. 97(12):6769–6774.

5. Nebel, A., et al. 2001. The Y chromo-some pool of Jews as part of the ge-netic 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 chro-mosomes traveling south: the Cohen modal haplotype and the origins of the

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, ac-cessed 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 pub-lished 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, Banaszak-Holl 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 genet-ics. 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 spiritual-ity in health care Proc (Bayl Univ

Endnotes

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