The proposed international Human Genome Diversity Project (HGDP) is not yet sufficiently feasible or well-defined to merit support from US government agencies, according to a study by the National Academy of Sciences.
The study, by a panel chaired by Jack Schull of the University of Texas Health Center at Houston, says the diversity of the human genome is of importance from both the anthropological and the biomedical point of view. But it says that the main focus of the study — a ‘consensus document’ prepared in 1993 by a human genome diversity subpanel of the Human Genome Organisation — meant different things to scientists from the two disciplines.
“Different participants in the formulation of the consensus document had quite different perceptions of the intent of the project, and even of its organisational structure,” the panel found.
It therefore suggests that the National Institutes of Health and the National Science Foundation — the two agencies that asked for the report — should confine support of human genome diversity work to projects inside the United States. The panel says they should hold discussions with foreign agencies about how inter-national projects should be structured before supporting any international work.
The academy's report is another setback for advocates of HGDP such as Luigi Luca Cavalli-Sforza, a population geneticist at Stanford University, who conceived the idea. Two years ago, the project received a cool response from the United Nations Educational Scientific and Cultural Organisation (see Nature 377, 373; 1995).
Critics say that the project would exploit genetic information obtained from people of confined gene pools — for example, from small, isolated tribes — without giving anything back. They maintain that the information obtained from such studies could lead to genetic discrimination.
The academy found that the work the project would do has “substantial scientific merit and warrants support”, but that ethical, legal and human-rights concerns, as well as organizational ones, must be met before it can proceed.
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Macilwain, C. Diversity project ‘does not merit federal funding’. Nature 389, 774 (1997). https://doi.org/10.1038/39693
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