|
|
Input wanted: NRC Study on Human Genome Diversity Project
Tania Williams (tlwillia@nas.edu)
8 Jul 1996 13:57:51 GMT
NATIONAL RESEARCH COUNCIL
COMMISSION ON LIFE SCIENCES
2101 Constitution Avenue Washington, D.C. 20418
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 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
objecives; 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 impacts 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). 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) of a world-wide survey of human genetic diversity?
3. What concerns does such a project raise, especially with respect to
ethical, legal, and social issues? How can these concerns be addressed?
If you are familiar with formal proposals for HGDP, do you believe that
they address these concerns adequately (please explain)?
4. What potential benefits and risks does the proposed project pose
specifically for the indigenous populations that would be surveyed?
5. Are there alternative ways to achieve the 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 do you think they might
best be addressed?
7. What other issues do you believe that the committee should 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, June 14. 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: Monday, June 17 at the
National Academy of Sciences, 2101 Constitution Avenue, Washington, DC;
and Thursday, July 25 at the Academys Arnold and Mable Beckman Center,
100 Academy Drive, Irvine, California.
Responses to the above questions and inquiries about registration for the
public meetings 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
I look forward to your response.
Sincerely,
Eric A. Fischer, PhD
|