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

Genetic discoveries resulting from the Human Genome Project will undoubtedly have major impacts on our society. While attention has become more focused on the Human Genome project during the past year with the race to complete the sequence of the human genome and gene identification, our need in the minority community is to heighten our awareness of both the benefits that can be expected, the issues that are of concern to our communities, and strategies for addressing those issues. The Human Genome Project will unquestionably provide enormous health benefits. Genetic Research is providing information on some of the most serious diseases that affect the minority community, such as sickle cell anemia, prostrate cancer, tay sacks disease, and mental disabilities. The prospect of individualized medical treatment with drugs based on a patient’s particular genetic make-up is considered just around the corner, as well as the use of gene therapy. There are significant legal, ethical, and social issues that must be resolved with these new discoveries. How confidential will individual genetic information be; what privacy safeguards? Will persons of all economic classes have access to genetic counseling? Will it be affordable? What about genetic tests results, who will use them? How will they be used? Are minorities involved in clinical trials? are disclosures adequate concerning risks; are there adequate protections? What are the disadvantages of noninvolvement? What safeguards are available for the use of DNA evidence in the criminal justice system? What about genetic information and racial identification; what about discrimination based on genetic make-up; are there protections? Will there be a "genetic underclass"? Is there danger in overemphasizing genetics as opposed to environmental influences in social behavior, etc.? These are a few of the areas that must be addressed.

Health officials, lawmakers, government regulators, and private industry will be addressing the social, legal, and ethicalquestions raised by the discoveries resulting from the Human Genome Project and related genetic research. Minority communities need to make their voices heard as policy decisions are made, laws passed, and regulations promulgated to address the issues raised. We must first define the issues and have input into the resolution of them, so that our interests are served along with those of the majority. Past history has shown that we must be vigilant and timely in advocating that interest.

In the area of protection from discrimination in sharing in the benefits of new discoveries, it is important to urge affordable genetic testing, counseling, and therapy for everyone. Protection against discrimination in health insurance benefits based on genetic factors will be needed, as well as protection from employment discrimination based on genetic makeup. Are federal and state laws adequate to prevent health insurance companies from using genetic information to deny health insurance coverage? Will Title I of the Americans with Disabilities Act provide adequate protection against employment discrimination, as genetic testing becomes more widespread?

In the criminal justice system, where African-American males are disproportionately, represented what uses of DNA evidence will be made? Will minorities have the same access to post-conviction relief based on DNA evidence as others in the criminal justice system? Will DNA profiling replace the use of fingerprints? Since minorities, in particular African-Americans, are arrested in larger numbers thantheir proportion in the general population, would DNA testing of all arrestees have an adverse impact on African-Americans.

Are we concerned about the ethnical issues involved in genetic engineering? Should our genes be treated as commodities for researchers and biotechnology companies to profit from them? How do we reconcile societal values, economic incentives needed to spur research and development, and our religious values.