Human Genome Project
Begun formally in 1990, the Human Genome Project is a 13 year effort
coordinated by the U.S. Department of Energy and the National Institutes of
Health to (1) identify all of the approximate 30,000 genes in human DNA;
Determine the sequences of the 3 billion chemical base pairs that make up
human DNA; (3) store this information in databases; (4) improve tools for
data analysis; (5) transfer related technologies to all sectors; (6)
the ethical, legal, and social issues (ELSI) that may arise from the
project; (7) to train scientists who will be able to use the tools and
resources developed through the HGP to improve health (8) provide
internships in order to encourage minority students to pursue the sciences,
biotechnology, and scientific research.
As leaders in
academia, Zeta Phi Beta Sorority's National Educational Foundation was the
first Greek letter organization to address this issue of concern. Zeta
Phi Beta Sorority has undertaken the responsibility to serve as a link
between the scientific community and the general population-the people whom
our local chapters serve in their communities. The Sorority believes that
there is a continuing need to disseminate this information to minority
communities about the Human Genome Project and the status of minorities
within this health research, as well as provide an appreciation of the
societal implications for the knowledge gained from this research.
As early as 1997, the
Zeta Phi Beta Sorority National Educational Foundation began to examine the
general level of awareness of the developments in genetics research,
particularly awareness of the Human Genome Project (HGP) in minority
communities. The Foundation's community contacts and work with various
communities throughout the country affirmed the communities' needs for basic
information about the Human Genome Project, its goals, and future outlook.
It also affirmed the need for a mechanism for the community to have its
concerns and input considered.
In 1998, the Foundation
Board of Directors gave its approval for the Foundation to plan and
implement a program that would assist in providing information on the Human
Genome Project to minority communities. The Foundation felt that it was
particularly suited to institute such programs since it has representation
and affiliations on a national level. The importance of minority input into
the ethical, legal, and social issues surrounding this research was clear to
all of the Foundation Board. The Board decided that in keeping with one of
the Foundation's primary objectives, encouraging and assisting needy
students financially in pursuing higher education through its scholarship
grants, it would add as a component to the information program, workshops
and networking that would be directed to encourage minority students to
pursue the sciences, biotechnology, and scientific research.
During the past three
years, the Foundation has planned and presented major Information
Conferences for Minorities on the Human Genome Project in New Orleans, LA
(1999); in Philadelphia, PA (2000); in Atlanta, GA (2001) and in Washington,
D.C. (2001). In the Fall of 2001, (October) the Foundation assisted the
Pennsylvania Legislative Black Caucus in planning a conference for
legislators and community representatives on the Human Genome Project and
worked as a collaborator with the legislative groups at the conference by
planning and implementing the two-day HGP program, and selecting the
conference HGP presenters. From this conference, participants gave input,
and lists of recommendations were submitted to Pennsylvania Legislator and
Chair of the Pennsylvania Black Caucus, The Honorable Anna Washington.
Through a grant awarded
by the US Department of Energy, Zeta Chapters, States and Regions have been
awarded mini-grants to sponsor very successful one-day informational
conferences, workshops and seminars in local minority communities through
out the country.
Some of the most
worldwide authoritative voices in genetic research have presented at HGP
conferences, including Dr. Ari Patrinos, Associate Director of Health and
Environmental Research at the U.S Department of Energy; Dr Francis Collins,
Director of the National Human Genome Research Institute, National
Institutes of Health (NIH) and Dr. Karen Nelson of the Institute for Genomic
The Foundation has worked
with such collaborators as Xavier University of New Orleans, Shiloh Baptist
Church Family Life Foundation, and the National Human Genome Center at
Howard University. The US Equal Employment Opportunity Commission's New
Orleans and Philadelphia District Offices, and the Community Outreach
Program at the National Human Genome Research Institute.
This project began under the Foundation Chairmanship of Issie L.Jenkins,
Esq., and has been continued and expanded under the present Foundation
Chair, Dr. Kathryn T. Malvern. In 2000, the project was adopted as the
signature program by the immediate past National President, Dr. Barbara West
Carpenter, whereby all of the sorority chapters, (nationally and
internationally) are actively involved.
The Zeta Phi Beta Sorority National Educational Foundation has been assisted
by funding from Zeta Phi Beta Sorority, Inc., The United States Department
of Energy, The National Human Genome Research Institute, National Institutes
of Health, the Consumer Health Foundation, Merck Research Laboratories,
Kaiser Permanente, the March of Dimes, Benedict College, and Howard
Compiled recommendations were made by minority community participants at the
New Orleans, Philadelphia, Atlanta and Washington, D.C. Conferences, as well
as the Pennsylvania Legislative Black Caucus Conference. It is our hope that
this compilation, when shared with decision-makers, will be helpful in
planning for the future to meet the concerns and needs of all our citizens.
The Foundation wishes to thank the more than 1500 attendees at these
conferences, the presenters, panelists, workshop leaders, and recorders for
their time and thoughtful participation.
Whether from the perspective of health care, career interest, social and
ethical implications, Zeta Phi Beta Sorority feels very strongly that a case
should be made in lay terms for the inclusion of all minority communities in
our country's exploration into genome research. Zeta Phi Beta Sorority's
National Educational Foundation is at the lead in disseminating information
about the Human Genome Project Initiative.