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National Educational Foundation

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; (2) 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) address 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 Research.

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 University.

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.
 

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