correspondence Support for genetic diversity project Sir — I am writing in response to a recent States. We believed this aim could be human genetic variability has substantial article on a report from the US National achieved only through restricting research merit and warrants support” and noted that Research Council, Evaluating Human applications to those that sought US federal the “most well-developed and widely Genetic Diversity (Nature 389, 774; 1997). monies. recognized proposal for conducting such a I chaired the committee that wrote William J. Schull survey is known as the… HGDP”. the report. Committee on Diversity, Contrast the committee evaluation with The article was correct in stating that the National Research Council, your headline, “Diversity project ‘does not committee does not think that the 2101 Constitution Avenue, merit federal funding’”, echoed in the first “consensus document” drafted in 1993 and Washington, DC 20418, USA paragraph of the News item, a phrase that is which has been construed as the Human not found in the NRC report. Genetic Diversity Project sets forth a clearly Sir — The News item by Colin Macilwain The NRC committee indeed suggests articulated, sharply defined proposal that (Nature 389, 774; 1997) covering the recent that the NSF and NIH should finance the committee could evaluate. However, prepublication report of the US National projects originating in the United States at this does not constitute disapproval of the Research Council (NRC) about research on least initially and “expand their support to concept behind the proposal; indeed, the human genetic variation as proposed in the the international scene only after the US committee strongly endorsed the scientific Human Genome Diversity Project activities are successfully launched”. These merits of a global study of human genetic (HGDP), cites only a few of the findings recommendations are understandably variation. A global study performed in a and recommendations in a comprehensive, directed at US funding agencies and cannot way that would not reveal the identities of informative and, by our reading, favourable and are not intended to refer to existing and the DNA donors or compromise their evaluation prepared by the expert NRC future studies funded by agencies in other rights could be of tremendous value for reviewing committee. The News item parts of the world. researchers who study human origins or reflects your journal’s apparent continuing Macilwain mixes roughly equal anthropology. The committee believes that bias against this scientifically acclaimed quantities of facts, in and out of date, with such a survey, if performed to protect the project. interpretations which do not reflect the rights of individual donors, does merit The task of the NRC committee, formed NRC report in fashioning the News article. federal funding. at the request of the US National Science Projects that call themselves HGDP or And your article is in error when it Foundation (NSF) and National Institutes reflect similar aims have started in half of asserts that the committee recommends of Health (NIH), was to assess the scientific the world. that federal funding agencies “should value, technical aspects and organizational L. Luca Cavalli-Sforza confine support of human genome diversity requirements of a systematic worldwide Department of Genetics, work to projects inside the United States”. survey of human genetic variability, as well School of Medicine, Our recommendation reads: “These as the ethical, legal and social issues raised Stanford, California 94305, USA agencies should focus their financial by the project. e-mail: [email protected] support, at least initially, on projects The report, some 81 typewritten pages, originating in the United States and expand contains, in addition to an executive (Former President, Human Genome Organisation) their support to the international scene summary and an introduction and Hertford College, Oxford OX1 3BW, UK only after the US activities are successfully background, five chapters dealing with, e-mail: [email protected] launched.” The word ‘originating’ is not respectively, scientific and medical value of Jean Dausset synonymous with ‘inside’ nor did we expect the proposed research, population Fondation Jean Dausset, it to be so construed. Our intention was to sampling issues, sample collection and data Centre d’Etude du Polymorphisme Humain, ensure that research, wherever it might be management, ethical and human rights 27 rue Juliette Dodu, 75010 Paris, France pursued geographically, would have to meet issues with respect to the project, and e-mail: [email protected] all of the ethical and legal restrictions at organization and funding support aspects. G The headline of the story was misleading. present placed on human genetic research The reviewing committee has concluded We reject the allegations of editorial bias. — funded by federal agencies in the United that “a global assessment of the extent of Editor, Nature.

observation is that researchers and their believe that patenting of basic information Patients and patents institutions realize that they can cash in on about the human genome — particularly Sir — Thomas et al. present data showing these discoveries from windfall profits about naturally occurring human genomic that the largest single category of patents from research supported in part by sequences and the association of mutation published in 1995 that included claims for the taxpayers. with disease — is necessary to promote human DNA sequences was in the area of Rather than optimizing patient benefit, downstream therapeutic development. To genetic diagnostics, and that 40 per cent these patents threaten to curtail research, our minds, the risks of these patents far of the patents they identified originated raise the price and lower the availability of outweigh the potential benefits, and they from US public-sector institutions (Nature testing, threaten patient privacy because of should be prohibited. 388, 709; 1997). potential litigation and insert a troubling Mildred K. Cho We take exception to their conclusion and unseemly profit motive into Jon F. Merz that public-sector researchers realize that the dissemination and use of genetic University of Pennsylvania, “patenting optimizes the chances of testing services. Center for Bioethics, patients receiving benefits from their Thomas et al. also state that industry will Suite 320, 3401 Market Street, scientific research”. not invest in treatments without adequate Philadelphia, The more likely explanation for this patent protection, but there is no reason to Pennsylvania 19104-3308, USA

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