The Challenges and Impact of Human Genome Research for Minority Communities

proceedings from a conference presented by
Zeta Phi Beta Sorority, Inc., National Educational Foundation
July 7-8, 2000, Philadelphia, PA

Zeta Background
Acknowledgments
Introduction
Foreword
Zeta NEF Purpose

Conference
Conference Mission
Conference Objectives
Research Plans
Conference Agenda
Conference Summary
Workshop I Summary
Workshop II Summary
Workshop III Summary
What's Next?
Photographs
Human Genome News article

Presenters
Dr. Aristides A. Patrinos
Dr. John Quackenbush
Dr. Georgia M. Dunston
Dr. Mary Kay Pelias
Dr. Fatimah Jackson
Dr. Christopher Adams
Dr. Rosalind P. Hale
Dr. Margaret C. Werner-Washburne
Rev. Dr. Deborah P. Wolfe
Dr. Jeroo S. Kotval
Betty K. Mansfield
Issie L. Shelton Jenkins, Esq.
Phyllis Griffin Epps, Esq.
Dr. Kathryn T. Malvern

Contact Information
Board of Managers
Presenters
National Educational Foundation

Did any of us ever believe that this new century and new millennium would bring with it the greatest age of discovery, "A Map of the Book of Life?" Researchers in the field of genomics must have had some idea of the enormity and approximate completion data of the human genome sequencing breakthrough. However, the average lay person, and particularly the minority communities, most likely know little or nothing about the Human Genome Project. With so much media exposure concerning this phenomenal research and the breakthrough announcement by President Bill Clinton, extolling the fact that the genetic code has been broken, many people have heard about the research. However, it can be assured that most do not have an understanding of what scientists currently know.

Thus, we are here today, with scientists, ministers, anthropologists, lawyers, educators, business persons, students and legislators, who will be in conversation, giving the explanation of the genome and the research findings implications for mankind. We are now at the threshold of a new era in biotechnology, which brings us to a crossroad, a crossroad that brings us to a crucial point where serious questions must be asked and answered. We are at a fork-in-the road. The question is, which road will lead to the "Betterment of the Human Condition?" Today we will hve conversations such as: What is the genome? Will the findings revolutionize the detection, prevention and treatment of diseases such as cancer, diabetes, Alzheimer’s disease, Parkinson’s disease, sickle cell anemia, etc.? Will this "power to heal" make life better for all, not just a few? What about ethics and privacy? Could medical privacy be invaded in such a way that insurance and employment will be negatively impacted? What does this all mean for minority communities?

After today’s conference, what is the next step? Because every minority individual cannot be in conversation with us today, it is imperative that each person in attendance becomes an ambassador for his or her community.

Our minority communities must be brought to a very high level of awareness as to what these medical research findings mean to each individual. We expect that this informational conference will not end today, but will continue for at least one year or as long as necessary, via community liaison coordinators and committees as well as all forms of media. The purpose will be to provide awareness and any new information on the human genome research findings and its implications.

At this Informational Conference, you will be provided time for input in deciding the possibilities and direction to be taken in determining the level of awareness needed and how to adequately provide this information to the minority communities. Conference participants, you are requested and urged to be a part of this new century, new millennium biological research information dissemination to our minority communities! Please join us in partnership.