Faultlines in "Bioscience Ethics": Lessons from the Human Genome Diversity Project

Should contemporary bioscience develop an explicit ethics (with the usual institutional apparatus: formal training, professional codes, and review boards)? If so, why? These questions animate "The Absent Professor" by Arri Eisen and Roberta M. Berry (2002), but because they focus chiefly on a future agenda, they do not have room to examine empirically any single past case of "bioscience ethics." Eisen and Berry describe in general terms what drives the need for self-conscious and formal ethics among bioscientists: demands for public accountability, new conflicts produced by marketplace incentives, and the need for ethnic and racial diversity among scientific workers. In similarly general terms they describe some likely ethical quandaries that bioscientists face: decisions about professional collaboration, relations with industry, the use of human and animal subjects, and so on. In the past decade of human population genetics, such issues have led scientists to produce a formal ethical response, but the response has not satisfied the specific needs outlined by Eisen and Berry. Examining this single case will sharpen our judgment about some of the dilemmas of elaborating explicit ethics in the life sciences.

Founded in 1991, the Human Genome Diversity Project (HGDP) called for the globally organized collection of human DNA material from diverse populations, including many isolated, small-scale indigenous societies. The project aimed to answer classic scientific questions about population structure, migration, mutation frequency, and other genetic events of the past (to paraphrase one of its leaders, L. Cavalli-Sforza). However, indigenous-rights groups began to vehemently attack the project in 1993. They denounced it as a prelude to "bioprospecting" and gene patenting by First World companies, as a violation of the rights of politically vulnerable populations, and as a resurgence of racism that labels certain groups as genetically inferior. Calls to respect the groups' sovereignty permeated the opposition to the HGDP. Utilizing the internet and pre-existing coalitions, critics urged all indigenous groups to refuse to cooperate with geneticists, and they pursued the matter up to the UNESCO International Bioethics Committee.

The HGDP personnel were forced to defend the ethical integrity of the project. They carried out the defense on several fronts: clarifying the project's rationale and organization in open letters to critics, running sessions on ethical and human-rights concerns at planning meetings, and writing a "Model Ethical Protocol" or MEP (NamC 1997). Their 42-page protocol represents arguably the most detailed ethics document in human population genetics. Was it successful, both in teaching ethics to practitioners and in satisfying the critics? Even its author admits it has a mixed record. He believes that it succeeds on its own terms but that most critics simply ignore it because they regard the HGDP as the archetypal villain in preexisting narratives about racist exploitation and creeping eugenics (Greely 1999). After labeling the project an enemy, critics have easily ignored disconfirming evidence such as the protocol. As a result, "[t]he HGDP is accused, without proof, of things that it is committed to avoiding, and . . . is urged to address issues about which it already had detailed, innovative, and progressive positions" (Greely, 299). In this case, even the most rigorous (and well-funded) attempts to introduce ethics into the life sciences has failed to satisfy the public's demand for accountability.

Examining the protocol more closely helps explain the impasse. The MEP presupposes a set of transcendent values. Respect for the autonomy of individuals and groups underlies its procedures for informed consent, and commitment to distributive justice underlies its recommendations about groups' contractual rights over their DNA. However, the protocol's explicit commitment to the standards of American bioethics—universal impartial reasoning and formal, legalistic procedures—should not blind us to its major goal: holding together a specific research project as the political landscape shifts beneath it. That is, the supporters of the HDGP (including some of today's most prominent geneticists) genuinely...