A number of scientists have proposed a worldwide survey of human
genetic diversity. This Human Genome Diversity Project (HGDP) would
involve sampling DNA globally from a range of human populations and
making those samples and information from them available to scientists
for research purposes. Proponents of the project have described several
potential benefits from such a study, including a better understanding of
human history and evolution, and possible biomedical applications.
However, some individuals and groups have raised concerns about such a
project, especially with respect to its potential impacts on the
populations that would be surveyed. At the request of the National
Science Foundation and the National Institutes of Health, the National
Research Council, the operating arm of the National Academy of Sciences,
has assembled a group of independent experts (roster appended) to perform
a study evaluating the proposed project, including its scientific value;
scope and objectives; technical and logistical issues; ethical, legal,
and social issues; and organization, management, and coordination with
other endeavors. The National Academy of Sciences is a private,
nonprofit organization chartered by Congress to provide independent
advice to the nation on science and its impact on society.
The committee would welcome your input on the questions before it.
If you wish, you can discuss the HGDP with the committee at one of two
public meetings (see below for information about registering; I regret
that the Council cannot reimburse expenses for attending the meeting).
Whether or not you can attend one of the meetings, please respond in
writing to those questions below for which you have relevant expertise
and experience. The committee will consider your responses in its
deliberations. Responses are intended only for the use of the committee
and will not appear in its report.
1. What is your interest or involvement in the proposed HGDP or similar
research? To what extent are you familiar with the formal proposals that
have been developed?
2. What do you consider to be the major potential benefits (scientific,
medical, and others) to society of a world-wide survey of human genetic
diversity?
3. What concerns does such a project raise, especially with respect to
human rights, and ethical, legal and social issues? How can those
concerns be addressed?
4. What potential benefits and risks does the proposed project pose
specifically for the indigenous populations that would be surveyed? Are
they the same for all populations, or do they differ based on the country
or countries in which the people live?
5. Are there alternative ways to achieve the potential benefits of the
proposed HGDP other than through a formal survey? If so, what are they?
6. What are the most important technical and logistical problems to be
addressed for such a project to succeed? How might they best be
addressed?
7. What other issues (such as patenting, equitable distribution of any
financial gains, sharing of data) should the committee consider with
respect to the proposed project?
Your response will be most helpful if it is no longer than 3 pages
(we welcome supporting documents such as articles and reports) and if we
receive it by Friday, July 19. While we are particularly interested in
your comments, please also feel free to copy this request to colleagues
with relevant expertise and experience.
The two public meetings are scheduled as follows: Thursday, July 25
at the Academys Arnold and Mabel Beckman Center, 100 Academy Drive,
Irvine, California; and Monday, September 16, at the National Academy of
Sciences, 2101 Constitution Avenue, Washington, DC. Both sessions will
be from 1 to 5 p.m.
Responses to the above questions and inquiries about registration for the
public sessions should be sent to
Paulette Adams
Board on Biology, NAS 358
National Academy of Sciences
2101 Constitution Ave. NW
Washington, D.C. 20418
tel: 202-334-2215
fax: 202-334-1687
email: padams@nas.edu
Please respond by email if possible. We look forward to hearing from you.
Sincerely,
Eric A. Fischer, Ph.D.
Director, Board on Biology and Institute of Laboratory Animal Resources
NAS 358
National Academy of Sciences
2101 Constitution Ave., NW
Washington, DC 20418
tel: 202-334-2215
fax: 202-334-1687
email: efischer@nas.edu
http://www.nas.edu/
*****
NATIONAL RESEARCH COUNCIL
COMMISSION ON LIFE SCIENCES
BOARD ON BIOLOGY
Committee on Human Genome Diversity
William J. Schull (Chair), University of Texas Health Center, Houston
George J. Annas, Boston University Schools of Medicine and Public Health,
Boston, Massachusetts
Norman Arnheim, University of Southern California, Los Angeles
John Blangero, Southwest Foundation for Biomedical Research, San Antonio,
Texas
Aravinda Chakravarti, Case Western Reserve University, Cleveland, Ohio
Georgia Dunston, Howard University, Washington, DC
Ward H. Goodenough, University of Pennsylvania, Philadelphia,
Pennsylvania
Richard R. Hudson, University of California, Irvine
Eric Juengst, Case Western Reserve University, Cleveland, Ohio
Michael M. Kaback, University of California, San Diego
Daniel R. Masys, University of California, San Diego
Kathryn Moseley, Henry Ford Hospital, Detroit, MI
Alan R. Templeton, Washington University, St. Louis, Missouri
Lap-Chee Tsui, The Hospital for Sick Children, Toronto, Canada
George C. Williams, State University of New York, Stony Brook
NRC Staff:
Eric A. Fischer, Study Director
Tania Williams, Research Associate
Paulette Adams, Administrative Assistant