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Scholars grapple with ethical issues of Genome Diversity Project
STANFORD -- A search for genetic diversity in ethnic groups could either dampen the racist, genocidal tendencies of human history or fan the flames, depending upon whom you believed at a symposium of scientists and other scholars at Stanford University Nov. 3-4.
The first day of the meeting was aimed at an analysis of the ethical implications of the Human Genome Diversity Project, a plan to collect DNA samples from individuals in about 500 geographically or linguistically isolated groups. The diversity project is not to be confused with its big brother, the $1.5 billion to $2 billion Human Genome Project; the ethical issues raised by that plan to map the entire human genome were discussed on the second day of the symposium.
Both meetings, open to the public, were organized by Stanford anthropology Professor Joan Fujimura, who holds a Henry R. Luce Professorship that aims to increase interdisciplinary research and public outreach on biotechnology.
The Human Genome Diversity Project has been dubbed the "vampire" project by non-governmental organizations that have launched a public relations campaign to oppose it. In response, project organizers have recruited anthropologists and ethicists to improve the study design and have developed a model ethics protocol for public discussion. Stanford law Professor Henry Greely said the protocol includes provisions that scientists must agree to if they want to join the project.
In spite of its beefed-up ethics protocol, some of the scholars at the symposium see the project's response to ethical issues as hopelessly inadequate. At least one suggested that scientific training itself needs an overhaul before geneticists and molecular biologists are equipped to produce results that will not be used the way Nazi Germany used eugenics to justify genocide.
One scholar asked the Stanford audience to consider how any new genetic information about who arrived first in the Middle East might be used. Just a day before Israeli Prime Minister Yitzhak Rabin was assassinated, sociologist Troy Duster of the University of
The diversity project, initially organized by Stanford geneticist Luca Cavalli-Sforza and the late Allen Wilson in 1991, is still in its planning stage, with the possibility that a pilot project could begin soon in Europe. If ever launched as currently designed, it would cost an estimated $25 million to $30 million worldwide and be conducted over five to seven years.
Unlike the Human Genome Project, which the U.S. Congress has funded at $100 million to $150 million per year, the diversity project has been rejected by various U.S. government agencies, including the National Institutes of Health, the National Center for Human Genome Research and the Department of Energy.
According to some speakers, the agencies do not see it as fitting in with their priorities. According to others, they simply want to avoid the political controversies they expect it would create. The National Academy of Sciences has agreed to give its opinion of the idea by the fall of 1996 and is in the process of naming a committee, according to Greely, a member of the project's North American organizing committee.
Two other members of the organizing committee - Yale geneticist Kenneth Kidd and University of Florida anthropologist John Moore - also participated in the symposium.
Most of the theoretical issues that the proponents hope the project could resolve have to do with human origins. Although some medical benefits could flow from the work, that is not its main purpose, Greely said. The theoretical questions, according to Stanford anthropologist William Durham, include whether all human life originated in Africa, how recently "human diversification" occurred and whether "human relatedness" is best described as a "branching tree or converging roots."
Diversity project proponents claim the benefits also include reducing the ethnic bias in the Human Genome Project, which aims to map a reference human genome largely from DNA samples taken from populations in Europe, America and Japan, the locations for most genome sequencing research.
Most geneticists believe there are no distinct racial categories on the genetic level, and some believe the diversity project's results can be used to fight against racism by showing the speciousness of claims of group superiority, Fujimura said. Many social scientists, however, fear that results will be used either to "construct new categories of stigma or to naturalize existing cultural categories," no matter how careful the geneticists are in conceptualizing, conducting and presenting their research, she said.
In opening the symposium, Fujimura noted that newspapers already have begun to refer to women who have a particular genetic mutation associated with higher rates of breast cancer as "carriers," and that the 1994 book The Bell Curve, even though it did not use genetic research as its basis, treated races as biological categories. It sold 400,000 copies.
Duster, who is a member of the National Advisory Council for Human Genome Research, said that the book alleges that 60 percent of all intelligence is genetic, and the American Society of Human Genetics would not sign a statement objecting to The Bell Curve's claim. The geneticists, he said, claimed they had no expertise in refuting the century-old statistical correlation methods used as a basis for the conclusion.
Anthropologist Moore said that one reason he joined the diversity project was that he saw it as "an opportunity for the good guys to have the data base and come up and say there are no races. . . . I may have been naive, but that was very much in my mind."
Moore is an advocate of the "converging roots" theory, partly because Soviet research in Asia and his own research on the anthropology of Plains Indians indicates that the exchange of genetic material through intermarriage is not just a modern phenomenon, he said. Biologists have tended to emphasize a hierarchical development of human subcultures, with groups diverging from a common ancestor and developing in isolation from their neighbors.
This model, he said, is based on speciation of plants and animals and ignores the fact that humans are one species, capable of exchanging genetic material. A more appropriate analogy, he has written, may be the channeling of a river that separates and recombines in a highly complex fashion.
Geneticist Kidd said he agreed that "racism is rampant and it's very destructive. But as a biologist and a geneticist, I don't have any hard evidence to argue against it without data. I can talk from a moral perspective," he said, but that is not effective with people who say "just look around you; people look different, they must be different."
Kidd's own genetic comparisons so far, he said, indicate that human origins are in-sub-Saharan Africa, where more human genetic diversity still exists than in the rest of the world.
First ethics, then science
In a similar vein, anthropologist Jonathan Marks of Yale said that "the existence of genes may be value-neutral, but their interpretation is not."
If genetics is ever to become more than a marginal social science, Marks said, geneticists must be trained to address the social questions raised by a given project before tackling the technical issues. They also need to be educated in the field's checkered history to ensure that they do not repeat past mistakes.
Marks used examples and quotations from the eugenics movement in the 1920s to drive home his point that geneticists frequently have been guilty of applying new technology to reinforce folk wisdom, which, he claimed, is never a recipe for scientific success.
"Genetics in the 1920s was corrupted by folk knowledge, but the scientists didn't realize it. Where science appears to confirm common belief, we need a higher standard of truth," he said.
Projects like the human genome diversity project should be conceived, designed and reported in a way that does not hurt anybody, or they should not be done, Marks asserted.
The diversity project organizers failed this test, he said, by initiating the project without involving scholars in fields that are more uniformly devoted to studying human origins.
If the project really wanted to accomplish the goals that it declares, it should be taking large numbers of samples from a few populations rather than small numbers of samples from a large number of populations. He also criticized the project for being too narrow in its goals. In addition to drawing blood samples, it should be collecting information about each individual's phenotype and life history. "The genetic information can't help medicine or epidemiology without life histories," he said.
During the question and answer period, Greely said Marks' characterization of the project was outdated. "Most of the quotes that you used were from 1991, the first year of the project. The anthropologists who are participating in the project have changed it substantially. When you read the current information on the project, I hope you will stop attacking it based on what it was like in 1991," he said.
The diversity project's ethics protocol includes provisions that require scientists to share any potential benefits that flow from the research. It requires more than an individual's consent to participate as a research subject. It is difficult to determine "who speaks for Irish Americans," Greely said, but most Native American tribal groups do have a source of cultural and sometimes governmental authority that the group recognizes. "We foresee a long, drawn-out set of discussions."
The protocol also requires the scientists to "aspire to a partnership relationship" with their subjects by employing members of the group being tested in the project. Greely said that the diversity project's developing ethics protocol "will constrain research."
In contrast, Duster said that most of the hard scientists engaged in the Human Genome Project, see the project's Ethics, Legal and Social Issues Working Group as an unfortunate add-on or as "an apologia - never something that might penetrate into the work of the geneticists themselves."
Most of Friday's discussion focused on how to ensure that data isn't misinterpreted or misused to promote racism and nationalism. To the extent that the project multiplies the information that can be used in that way, Greely said, it has an obligation to do everything it can to prevent such misuse. The draft protocol for the project calls upon the project sponsors to include public education and to form a "rapid response team" that would react to such events as the news conference held recently by a Bosnian-Serbian physiologist to claim Serb superiority to other European peoples based on the length of their thighs.
Eric Juengst, of the Center for Biomedical Ethics at Case Western Reserve University and formerly of the Human Genome Center, said he is optimistic that project scientists can work out their ethical dilemmas. The recombinant DNA debate in the '70s, he said, led scientists to successfully create legal rules under which they can clone genetic material, and now scientists in the Human Genome Project have proposed legal rules to prevent insurance discrimination based on genetic information about individuals. The diversity project, he said, represents "the next level of difficulty." Its task is to "work on peace, which is pretty far afield from simply doing one's science."
Stanford geneticist David Cox, a member of the Ethical, Legal and Social Issues Working Group of the Human Genome Project, urged his colleagues in genetics to "pay attention" to the issues being raised by social scientists because, he said, he is beginning to believe that "the tail" of mapping genes may be "wagging the dog" of culture. He added that he thought of himself as one of the "geeky guys" off to the side of society until recently, when he came to realize that the public seeks genetic information as power and tends to see genetic findings as "deterministic."
"We have a big problem here, but it's not because of the diversity project [alone]," Cox said.
Staying close to home
Both Marks and Juengst suggested that the diversity project begin by studying the so-called genetic ethnic roots of people in their own industrialized societies, rather than groups considered to be more indigenous and less hybridized. For Marks, one advantage is the written record against which genetic findings can be checked to reduce the potential for error in interpretations. For Juengst, there is the political advantage that these groups are "the least vulnerable subjects. . . . At the risk of Eurocentrism, maybe we should let the Europeans go ahead with Europeans and European Americans as a pilot study," Juengst said, "to watch the fallout, to evaluate the social consequences of differentiating Irish and English genes."
That may indeed happen, because the project has generated little controversy among Europeans, Kidd said. The diversity project's European organizing committee is meeting in Barcelona this week, he said, "to try to decide on which loci to use in common across European populations. Poles will study Poles, etc., but they are collaborating to look at the same [genetic] loci."
Biologist Frank Dukepoo of Northern Arizona University, who works on finding a gene for albinism, spoke also of the need for balance and for respect for different value systems. He said he lives with the sometimes contradictory perspectives he has gained as a scientist and those he has gained from being part of the Hopi culture.
His 85-year-old mother, he said, always asks him a series of questions when he returns from a meeting, and one of them is whether or not it began with a prayer or call for spiritual guidance. "No prayer offered at the beginning [of the symposium] tells you where we are at," Dukepoo said. "There is nothing good or bad, right or wrong; that's just your value system."
Stanford anthropologist Renato Rosaldo, who is president of the American Ethnological Society, urged scientists involved in such projects to realize their communication to the world is not taking place in a vacuum. The world, he said, is already filled with talk and stories circulating about what is happening in biomedical research.
To illustrate this point, he recounted a story he had heard recently from Guatemala, where some people believe that adults are being drugged and their livers stolen so they can be used in transplants in the first world. A similar global folktale is that children are being adopted by first world families so that their organs can be harvested.
"Global folklore is out there. That must be recognized as part of efforts to communicate projects like the human genome diversity project," he said.
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