By Virginia R Dominguez (U Iowa) -

   Contradictory and misleading press
 coverage of a forthcoming report on
 the merits of the Human Genome
 Diversity Project (HGDP) warrants our
 attention.  "Evaluating Human Genetic
 Diversity" is the work of a committee
 of 17 scientists and scholars put togeth-
 er by the National Research Council
 (NRC) of the National Academy of
 Sciences (NAS), in response to a
 request from the National Science
 Foundation and the National Institutes
 of Health early in 1996.  A news story
 in Science (October 24 1997, p 568)
 claims that the report endorses the
 Human Genome Diversity Project,
 whereas a news story dated the day
 before in Nature claims that it does not.
 The headlines alone tell the story.
 According to Science, the "NRC OKs
 Long-Delayed Survey of Human Ge-
 nome Diversity." According to Nature
 "Diversity project 'does not merit fed-
 eral funding'."
   If Science's Elizabeth Pennisi is cor-
 rect in reporting that "both proponents
 of the HGDP and potential backers
 welcomed the report's conclusion," she
 and they have read a different report
 than the report that I, as a member of
 the committee, helped write.  Nowhere
 in the report does our committee en-
 dorse the HGDP.

 No Consensus

   It is significant that the report is not
 entitled "Evaluating the Human
 Genome Diversity Proiect." The origi-
 nal agreement between the NRC and its
 two sponsors charged our committee
 with the task of evaluating the proposal
 to establish the HGDP.  But as we state
 clearly at least three times in the report
 (including in our preface and the
 report's executive summary), "in its
 fact-finding, it became apparent to the
 committee that the precise nature of the
 proposed survey was more elusive than
 the committee had initially envisioned;
 different participants in the formulation
 of its consensus document had quite
 different perceptions of the intent of
 the project and even of its organiza-
 tional structure" (pp iv, 1, 13).
   It might be surprising to both advo-
 cates and critics if at various points
 over the past 5 years, they developed
 their own strong sense of what the
 HGDP stood for.  But we frankly found
 "no sharply defined proposal that [the
 Committee] could evaluate" (pp, iv, 1,
 and 13), no clarity as to whose version
 of the HGDP we were to take as the
 right one and no consensus even
 among members of the North Ameri-
 can Committee for the Human Genome
 Diversity Project on some of the most
 sensitive and crucial questions, such as
 whether (1) there really are "target
 populations" for such research, (2)
 indigenous communities would be
 vastly overrepresented in a presumably
 global survey and (3) participating pop-
 ulations would have the right to with-
 draw from an ongoing research project
 at any point after agreeing to it.  It
 should then come as no surprise that
 the committee constituted by the NRC
 chose not to endorse the HGDP.

 Substantive Recommendations

   The committee did choose, nonethe-
 less, to address key scientific, legal,
 technical, human rights, managerial
 and ethical issues entailed by research
 on human genetic variation and hence,
 to tackle the tough and controversial
 issues that have surrounded talk of the
 HGDP on websites, at scientific work-
 shops, in a Cultural Survival theme
 issue appearing in summer 1996 and
 elsewhere.  The report is both broad in
 its applicability and specific and firm
 in a number of its recommendations.
   Several of these warrant much more
 attention than they have gotten in the
 media and are even underplayed in the
 NRC's official press release of October
 21, 1997.  It is important to know them
 because they concern many of the peo-
 ple anthropologists have lived with and
 studied for years and, of necessity,
 have a bearing on anthropological
 research practices.
   Our report specifically insists on:
   n Participants' rights to withdraw
 from a research project at any time,
 including rights to withdraw their bodi-
 ly samples from a stored collection in
 cases where such samples remain link-
 able to that individual or group of indi-
 viduals;
   n Participants' rights to participate
 in the design of any such research
 (should they individually or collective-
 ly want it) and hence, not become sim-
 ply depositors of bodily tissue samples;
   n Acceptance of the notion that
 where there is any doubt about the
 power of a potential participant to
 withhold freely given informed consent
 (such as in locations where women's
 rights may be severely limited), those
 potential contributors of body samples
 should be excluded;
    n A need to broaden the notion of
 informed'consent to recognize commu-
 nity interests and not just individual
 rights;
    n The need to require a high degree
 of communal, local and regional con-
 sultation throughout the study process
 but not necessarily require "community
 consent" (in addition to individual con-
 sent); and
   n The need for greater awareness of
 the dangers of racializing incurred in
 all "population-based" sampling (even
 when local terms of reference are used)
 and of the intended or unintended con-
 sequences of such data being available
 for use by scientists and others.
    The report makes two further points:
 (1) Biomedical gains are likely to be
 too limited and expensive (and social,
 human rights and ethical risks too
 great) to justify a sampling strategy
 requiring detailed personal, phenotypic
 or family medical histories. (2) US-
 government funding for human genetic
 variation research should be limited (at
 least for the foreseeable future) to pro-
 jects originating in the US, with the
 idea that an existing governmental and
 scientific infrastructure in this country
 could be mobilized to enforce the
 strong legal, evidentiary and ethical
 recommendations made in our NRC
 report more easily than in a multina-
 tional and multistate effort.
    The NRC report is important be-
 cause of 'these recommendations, and it
 is these findings that deserve a set of
 corrected news headlines.
    [Virginia R Dominguez is professor
 of anthropology and codirector of the
 International Forum for US Studies at
 the U of Iowa.  Among her publications
 are 4 books, including White by Defi-
 nition:Social Classification in Creole
 Louisiana (1986, 1993) and People as
 Subject, People as Object: Selfhood
 andPeoplehood in Contemporary
 Israel (1989), and 4 (co)edited collec-
 tions, including Questioning Otherness
 (1985), (Multi)Culturalisms and the
 Baggage of "Race" (1995) and the
 forthcoming From Beijing to Port
 Moresby: The Politics of National
 Identity in Cultural Policies (1998).]