Social scientists may argue among themselves whether what they call "culture" is part of the human phenotype or part of the built human environment, but few would disagree that determining the interactions between genes and the intricate environments that humans create is an enormously challenging task.

Anthropologists, for example, know firsthand that charting "the human environment" is like charting a tropical jungle. Researchers who haven't themselves traveled such difficult scientific terrain may have little idea how easy it is to get intellectually and actually lost.

While almost any human characteristic, or set of arbitrary characteristics, can be used to define a "population" for clinical purposes (say, "women between 35-50 years of age"), it is much harder than some may realize to study the frequency and distribution of DNA polymorphisms in "real" (historically valid) human populations because, to begin with, it may be all but impossible (some anthropologists would say impossible) to define "true human populations."[1]

In this light, designing sampling strategies to investigate human DNA variation is a task that not only raises ethical, legal, and social concerns; there are also basic scientific issues of fact & theory that need to be examined and resolved.

Therefore, based on the findings of the 1998 Chicago Workshop, we think it is time to address not only the practical, ethical, and legal issues being raised by rapid advances in the technologies of molecular genetics but also scientific and organizational concerns. Who are the stakeholders in this scientific (and social, political, religious, etc.) domain? How well do they understand (and mutually acknowledge) that they have a collective stake in the study of health & genetic diversity? How well do they understand that they need to collaborate? And what are the obstacles and benefits of such collaboration?

To paraphrase what Azad and Wiggins[2] have written about the development of geographic information science, unless reasonable consensus is reached about who has a legitimate stake in the study of genetics and health-and exactly what their joint issues are- collaboration and initiatives to introduce effective ethical, legal, and scientific protocols, standards, and safeguards will fail.

We submit that society and the research communities concerned have scarcely begun to identify and agree upon who are the legitimate stakeholders in this complex research domain and why (and how) they need to collaborate with one another.

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Notes:

1. Terrell, John Edward, and Pamela J. Stewart. 1996. "The Paradox of Human Population Genetics at the end of the Twentieth Century." Reviews in Anthropology 25:13-33.
2. Azad, B., and L. L. Wiggins. 1995. "Dynamics of Inter-Organizational Geographic Data Sharing: A Conceptual Framework for Research," pages 22-43 in Onsrud and Rushton 1995.