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The U.S. Department of Energy's (DOE) Human Genome Program devoted 3% of its
annual Human Genome Project (HGP) budget toward studying the ethical, legal,
and social issues (ELSI) surrounding the availability of genetic information.
Some of these projects studied potential effects of ELSI, and others sought
to educate professionals through literature, conferences, workshops, and multimedia.
Among the programs funded by DOE ELSI were educational materials for physicians,
educators, students, clergy, and judges and other legal professionals.
DNA studies do not indicate that separate classifiable subspecies (races) exist within modern humans. While different genes for physical traits such as skin and hair color can be identified between individuals, no consistent patterns of genes across the human genome exist to distinguish one race from another. There also is no genetic basis for divisions of human ethnicity. People who have lived in the same geographic region for many generations may have some alleles in common, but no allele will be found in all members of one population and in no members of any other.
In 2004, DOE sponsored a Nature Genetics supplement called, Genetics
for the Human Race. This supplement originated from a May 2003 workshop
held by the National Human Genome Center at Howard University in Washington
DC. The workshop, Human Genome Variation and 'Race', and this special
issue of Nature Genetics were proposed by scientists at Howard University
and financially supported by the Genome Programs of the US Department
of Energy, through its Office of Science; the Irving Harris Foundation;
the National Institutes of Health, through the National Human Genome Research
Institute; and Howard University. The supplement contains articles based
on the presentations at this workshop.
In 2002, DOE sponsored the production of a 24-page genomics insert in the Journal
for Minority Medical Students. Distributed in all issues of its spring issue,
the supplement covers basic genetics, Zeta Phi Beta's genetics education program,
the genetics of sickle cell anemia, medical genetics, and ELSI issues.
Another ELSI project was with the National Educational Foundation of Zeta
Phi Beta Sorority, Inc. The sorority planned and conducted major informational
conferences on the Human Genome Project and its impact on minority communities.
The conferences covered a variety of topics--from basic genetics and HGP history
to gene testing and careers in genetics. Held in Chicago in 2003, Atlanta and
Washington, D.C. in 2001, Pennsylvania Legislative Black Caucus in 2001, Philadelphia
in 2000, and New Orleans in 1999, the conferences have sparked numerous follow-up
meetings and training sessions led by members of the educational foundation.
[Proceedings from the 2000 conference are available online.]
In 1996, DOE HGP partnered with Tuskegee University to present the 3-day
conference, “Plain Talk About the Human Genome Project.” The
conference brought together internationally recognized scientists, bioethicists,
and legal scholars from government, industry, and academia to discuss
the ELSI of the use and misuse of genetic information. In rare "both-sides-of-the-argument"
discussions, speakers expressed apprehension about the project and the
use of its resulting genetic information. Concerns ranged from the fear
of actuarial classifications of "genetic exceptionalism" to the burden
African Americans would face if they were among those labeled by some
as a biological underclass. Focused particularly on how the data might
affect African Americans, the meeting also was a vehicle for students
from Tuskegee and other historically black institutions to meet with genome
scientists, hear the issues, and explore career possibilities in genomics.
Proceedings from this conference are available as a book, Plain Talk
About the Human Genome Project, 292 pp., 1997. [Contact for book:
Tuskegee University, 800/848-9322 (press 4) or 334/727-8525.]
About 150 leaders of minority communities came together in June 1997
at the University of Maryland, Baltimore (UMB) to learn about the Human
Genome Project. The DOE HGP-sponsored meeting's goals were to (1) inform
minority communities about the Human Genome Project by explaining its
potential benefits and clarifying its possible ELSI implications; and
(2) make the aspirations and interests of these communities known to genome
project scientists and policymakers. This program grew from organizers'
concerns about an information vacuum among minorities regarding the genome
project and the possibility that suspicions would arise about the project's
intent. Proceedings from this conference were combined with an additional
essay to form the book, The Human Genome Project and Minority Communities:
Ethical, Social, and Political Dilemmas, edited by Raymond Zilinskas
(Monterey Institute of International Studies) and Peter Balint (University
of Maryland). It addresses the divisions between minority groups and the
scientific community, particularly in the area of medical and genetic
research. 144 pp., 2000. [Available through bookstores, including online
For more information see the Genetic Anthropology, Ancestry, and Ancient Human Migration page.