Perspectives on Science 7.4 (1999) 413-446
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Value-Bifurcation in Bioscience:
The Rhetoric of Research Justification
Laurie Anne Whitt *
Excerpt from testimony by Luca Cavalli-Sforza, population geneticist and principal proponent of the Human Genome Diversity Project (HGDP) before the 1993 Hearing on the HGDP before the U.S. Senate Committee on Governmental Affairs:
Senator Akaka: Preservation of genetic data of near-extinct populations is an important issue that I believe warrants further examination. Would you say that a primary component of your proposed study is the collection of genetic samples from cultures that are vanishing? Why does this project need to be done now? Why the urgency?
Dr. Cavalli-Sforza: We are observing, because of economic development of Third World countries, an enormous increase in migration, and also disappearance of populations living in peripheral locations, and very frequently marginal conditions . . . If we want to reconstruct populations history, and understand under what conditions certain diseases became prevalent in a population, we have to study these things now, before complete confusion (Senate 1993, p. 39).
Excerpt from testimony provided at a 1993 meeting of the UN Commission on Sustainable Development by Victoria Tauli-Corpus, indigenous representative: [End Page 413]
After being subjected to ethnocide and genocide for 500 years (which is why we are endangered), the alternative is for our DNA to be collected and stored. This is just a more sophisticated version of how the remains of our ancestors are collected and stored in museums and scientific institutions. Why don't they address the causes of our being endangered instead of spending $20 million for five years to collect and store us in cold laboratories. If this money will be used instead to provide us basic social services and promote our rights as indigenous peoples, then our biodiversity will be protected (Tauli-Corpus 1993, p. 26).
Cavalli-Sforza and Tauli-Corpus are agreed on one thing: genetic diversity is worth preserving. To do so, Cavalli-Sforza and other proponents of the HGDP propose that scientists take samples from the bearers of such diversity 1 before they 'vanish,' and deposit these in data banks as a genetic 'fund' for future research. For Tauli-Corpus, and other indigenist critics of the HGDP, the ethically and politically appropriate means to preserve genetic diversity is to ensure that its bearers themselves survive.
According to its advocates, the HGDP proposes to increase knowledge of human genetic diversity by preserving for future researchers the genetic materials responsible for that diversity. Ensuring the survival of the human sources of those genetic materials is not a scientific priority. Some of the project's supporters may regard the latter as a social priority, though I have yet to come across any arguments from them to this effect. Indeed there is a decided sense of inevitability in the talk of 'vanishing' that fuels the urgency of the research enterprise. In the words of geneticist Francis Collins "I do think the urgency is a compelling argument . . . populations are not going to be there indefinitely for us to decide at some future date we would like to sample them" (Senate 1993, p. 23). Preserving human genetic materials for future study is seen as a scientific priority; they are crucial resources for scientific knowledge production. While the use of knowledge of genetic diversity is subject to ethical and political critique, its production (the story goes) is not. Conversely, preserving the human sources of the desired genetic materials is not and cannot be a scientific priority because, as a matter of ethics and politics, it is not (seen to be) a [End Page 414] matter of science. When the story is told from the perspective of an advocate such as Marc Feldman (in Gutin 1994), it often begins and ends with a hand-washing observation: "We are scientists, not politicians" (p. 75). HGDP critics, such as biologist and anthropologist Jonathan Marks (1995a), see it otherwise: "As if opening the veins of indigenous peoples of the world might not constitute a significantly political act" (p. 72).
This paper contends that...