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10/23/95

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Symposium to explore complex issues of genetic testing, technology

STANFORD -- Even before the symposium starts, reports have begun filtering to Joan Fujimura of women who are contemplating mastectomies if they should test positive for a genetic mutation that has been linked to a greater risk of developing breast cancer.

Fujimura, the Henry R. Luce Professor of Biotechnology and Society, wonders what she would do if she thought she was a member of a high-risk group.

Fujimura says she has asked herself a number of other questions as genetic testing has progressed. For example, if she had a child with a serious, genetically linked blood disease, would she decide, as some women have, to have another child in the hope that the second could be a healthy bone-marrow donor to the first? Or what would she do if her fiancé's parents demanded she be tested for the cystic fibrosis gene because one of her siblings had the disease?

"I'm not in these situations, so I can't say what I would do, " the professor of anthropology said recently.

"I never took the birth control pill because I didn't believe the statistics," she added. "I understood that the likelihood [of getting cancer from the pill] is low for the population as a whole, but it might not be low for me. I thought, 'I don't need to take it, so why take the chance?' "

The desire for certainty, Fujimura said, may be one of the factors scientists and engineers overlook when they try to deal with the ethical, social and political implications of developing technologies.

In genetics, in particular, she said, most scientists "see themselves as having a mandate to produce treatments that will help people." How people actually use scientific knowledge -- as individuals, families and whole communities -- is one of the issues that will be considered at the symposium.

That is the kind of question Fujimura hopes will be addressed at the symposium she has organized on "Genetics and the Human Genome Project: Where Scientific and Public Cultures Meet," convening Nov. 3 and 4 at Stanford.

Molecular biologists and other researchers who look for such genes as the one linked to breast cancer in women of Ashkenazi Jewish ancestry will gather with social scientists, anthropologists, historians and philosophers in the Oak Room of Tresidder Union on Friday, Nov. 3, and in Kresge Auditorium on Saturday, Nov. 4. The public, including high school students, has been invited because, Fujimura said, it's important that scientists and non-specialists in science have more opportunities to listen to the complex issues involved in discussions of genetic technology.

The media often report on so-called genetic "discoveries," Fujimura said, leaving out many of the caveats and complexities. For example, she said it is common for researchers to talk about genetic mutations that indicate someone who is healthy at the moment nevertheless has a "predisposition" or "susceptibility" to cancer. But at a recent meeting of the Ethical, Legal and Social Implications Working Group of the National Center for Genome Research, she said, "there were at least five geneticists in the room and they all had different interpretations of a predisposition or susceptibility [to breast cancer]. There are also different kinds of breast cancer, and there is interaction with the environment. So, if you have a single mutation, is that enough to cause breast cancer?"

From her long association with scientists, Fujimura says she believes most of them "want to be very clear about their technology. They want the public to understand the complexities involved, and they often call it 'educating the public.' But the problem is that the public just doesn't take information. They remake of it what they will in an ongoing discussion in their communities."

Fujimura, who received her doctorate in sociology from the University of California-Berkeley in 1986, came to Stanford from Harvard as an associate professor of anthropology in the fall of 1993. She has written on developments in genetics, molecular biology, biotechnology, biomedicine and HIV-AIDS research. She teaches in Stanford's Program in the History and Philosophy of Science as well as in anthropology. As part of her Luce Professorship, Fujimura organizes and hosts workshops, and a talk series that links research in anthropology, sociology, history and philosophy in an attempt to understand the construction of science, as well as the place of science in people's daily lives.

In addition to her current research on the development of genetics and the Human Genome Project, Fujimura also studies information technologies in the United States and in Japan, where she was a visiting scholar this summer at Tsukuba University's Institute of Health Sciences. Her work on genetics and information come together in a project she refers to as "bodies in hyperspace" -- a study of how "human bodies become represented as bits and bytes of information" in data bases.

Among the issues to be discussed at the upcoming symposium, Fujimura said, are the legal, political and ethical questions surrounding the search for a gene associated with homosexuality. Participants also will discuss the potential social consequences of linking ethnic categories to particular gene mutations and the controversies surrounding the Human Genome Diversity Project, a proposal initiated by Stanford geneticist Luigi Cavalli-Sforza to study genetic variations in worldwide populations by gathering DNA samples from about 25 individuals in each of 500 population groups who are isolated from each other by language, geography and other factors.

In a recent editorial, Nature magazine gave "two cheers" to Cavalli-Sforza. The "third cheer" was withheld, the editors said, because "it is understandable that many people (and not only those directly involved) should be alarmed at the uses to which such information could be put, while researchers cannot guarantee that the data they gather will be such that they cannot be misused; they can merely promise to use their best efforts to ensure that does not happen."

Cavalli-Sforza has frequently pointed out that he and other geneticists expect the research will show that intragroup differences are greater than the differences between groups. But "that misses the point of the objection," the editors said, "which is that the project may make racial members objectively identifiable, and to their disadvantage."

Fujimura and others see similar issues arising from research that begins as an effort to identify possible genetic links to a specific disease. The recent report of a single mutation in women of Ashkenazi Jewish ancestry that may increase the risk of breast cancer, for example, was the result of researchers looking closely at families with high rates of breast cancer.

"Scientists and engineers produce a technology, and we as part of Stanford, are part of that process," Fujimura said. "We try to deal with unintended consequences, but often it is post-hoc -- after we have developed the technology. That then causes us to address problems as they are pre-formatted by the technology.

"The development is taken for granted, that we have to produce them. The good argument for that is, of course, that this technology may really help people, but there are also all these unintended consequences."

Bringing experts from different disciplines together is important to analyzing consequences, she said. "There are other concerns besides the individual patient that geneticists often don't define as concerns." Her own training in anthropology and sociology shapes her perception differently. "In a sense, I am not looking at individual decision-making. A lot of this research has implications for actors that are not individuals but institutions.

For the symposium, she said, "I'm putting together social scientists who study communities, who study people not as patients or as potential subjects [of research] but as people who have ongoing lives and discourse. Discourse is not just talk. It's how people live and how they make meaning."

During a recent interview, she said, "We know we don't have biological races and that cultures and ethnic groups are very fluid things. What happens when we start talking about genetic dispositions for disease and behavior traits of so-called ethnic groups?"

Fujimura noted that a substantial effort already has been mounted to deal with ethical issues growing out of new technology. For example, about 5 percent of the funds for the Human Genome Project, an estimated $3 billion scientific effort aimed at mapping a composite human genome from samples taken from many people, is devoted to research on the ethical, legal and social implications of the technology.

Conferences have been held related to this effort, but Fujimura said most of them have focused on such "post-hoc practical problems" as how the technology might affect individuals' health insurance coverage and rights to privacy, and the potential abuses of prenatal testing.

The focus of the upcoming symposium also will be on what she sees as more basic questions, such as how genome research and mounting information about genetic composition will influence people's understandings of themselves and each other.

Speakers at the conference follow:

Paul Billings, Veterans Affairs Medical Center and Stanford University Medical Center: "Bias in Gene Seeking"

David R. Cox, Department of Genetics, Stanford University: "Genetic Technology and Public Policy: The Case of Breast Cancer in Jews"

William Durham, Department of Anthropology, Stanford

Troy Duster, Department of Sociology, University of California-Berkeley: "Lingering and Re-kindled Concerns from the 19th Century on Science, Race and Ethnicity"

Henry Greely, School of Law, Stanford : "The Human Genome Diversity Project: Ethical, Legal and Social Issues"

Janet Halley, School of Law, Stanford: "The Law and Politics of the 'Gay Gene.' "

Dean Hamer, Section on Gene Structure and Regulation, N.C.I., National Institutes of Health: "Genes and Human Behavior: Cross- Cultural Similarities and Differences in Male and Female Sexual Orientation"

Valerie Hartouni, Department of Communication, University of California-San Diego

Eric Juengst, Center for Biomedical Ethics, School of Medicine, Case Western Reserve University: "Lineage, Land Tenure and Demic Discrimination: The Social Risks of the Human Genome Diversity Project"

Kenneth Kidd, Department of Genetics, Yale University Medical Center: "New Understandings of Recent Human History from DNA Studies"

Mary-Claire King, Medical Genetics Division, University of Washington Medical Center

Jonathan Marks, Department of Anthropology, Yale University: "Why Human Genetics is a Social Science"

Dorothy Nelkin, Department of Sociology, New York University: "The Policy Implications of 'Genetic Essentialism' "

Renato Rosaldo, Stanford Department of Anthropology

  • Barbara Katz Rothman, Department of Sociology and Anthropology, City University of New York: "The Here and Now of Genetic Testing: Issues in Prenatal Diagnosis"

The conference will begin at 9:30 a.m. both days and continue to about 6 p.m. For more information, see the World Wide Web page for the symposium at http://www.stanford.edu/~luce.

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