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The Challenges and Impact of Human Genome Research for Minority Communities proceedings
from a conference presented by |
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Zeta
Background Conference Presenters Contact Information |
Conference Summary On July 7 and 8, the Zeta Phi Beta Sorority, Inc., and its National Educational Foundation held an information conference on the challenges and impact of human genome research for minority communities in the Philadelphia area. The 250 attendees included representatives of minority organizations, civic and religious groups, health communities, government, student groups, and the public. Because the conference was held in conjunction with the sorority’s national meeting (July 9-14), minority representatives from states across the country also were present. The symposium was arranged by the Zeta Foundation under the leadership of Chair Issie L. Jenkins, Esq., and Conference Project Director Dr. Kathryn Malvern. Sorority President Dr. Barbara West Carpenter involved the entire organization in helping to sponsor the event. The conference was held several weeks after the President’s announcement that 97% of human genome sequencing has been completed, and that differences had been resolved between private and public sectors in the sequencing race. Meeting objectives were to make minority communities more aware of the Human Genome Project (HGP) and its status, to inform them of the Project’s benefits, and to provide a forum for minority input. Other topics were implications and concerns raised by HGP research, including ethical, legal, and social issues (ELSI). The symposium also addressed the need to expand the pool of minority scientists and the challenge of science education for minority students. Conference Program The Keynote Speaker was Dr. Ari Patrinos, Associate Director of Health and Environmental Research at the U.S. Department of Energy. He discussed the history and accomplishments of the HGP and provided background information on the President’s announcement. Indicating that the HGP’s outcome will dramatically affect the country’s economy, Dr. Patrinos emphasized the importance of involving minority communities so that all can share in Project benefits and so related concerns can be avoided or responsibly addressed. Other presenters included Dr. John Quackenbush (The Institute for Genomic Research), who spoke on Decoding the Book of Life and how genomics will influence approaches to a variety of problems in modern biology. The challenge for the future, he said, will be to identify specific genes, determine their functions, and explore genetic changes that can lead to disease. A panel discussion on the Project’s implications for minority health issues included Dr. Georgia Dunston and Dr. Robert Murray, both of Howard University Medical School. In addressing recent programs that screen for genetically determined health disorders, Dr. Murray spoke of ethical and legal conflicts that can arise when the disorder will not be manifested for a number of years and intervention is unknown or of questionable value. He indicated that such problems often arise when a person is merely placed in a category of increased risk for developing the condition; this situation is more likely to have serious negative consequences for members of minority groups. Finding a solution to this dilemma is imperative before widespread genetic screening programs are put in place, according to Dr. Murray. He and Dr. Dunston agreed that, without protective measures, information from genetic screening could be used to stigmatize or discriminate against minorities. Dr. Dunston questioned the genetic samples being used in human genome research and whether the represent enough variation in population. Indicating that the genome study deals with the foundation of identity, she expressed concern that present knowledge is too limited. Dr. Mary Kay Pelias, Louisiana State University Medical School, spoke on genetic problems in clinical practice and biomedical research. Using hereditary traits and diseases as illustrations, Dr. Pelias described how they are manifested in Louisiana’s diverse population and how relevant historical developments and patterns of immigration can influence health issues. Dr. Fatimah Jackson, anthropologist at the University of Maryland, emphasized that the African-American perspective on human genome research is critical, although it cannot substitute for that of other groups. Insights of African-Americans are important because they so frequently have been victims of "science" and "quasi-genetic inquiries. They were among the first to call for representative sampling in the Project, Dr. Jackson said, and for the inclusion of African-American genetic sequences in the human genome’s template. If all groups were not included in the baseline template, some might not be considered by the big pharmaceutical companies, intent on making commercial drugs linked to specific genotypes. Dr. Jackson pointed out that minorities can not assume inclusiveness at any stage of the HGP and that the pattern of sampling often reflects power relationships. Minorities will need to demand such inclusiveness. On the second morning, Dr. Daniel Drell of the DOE Human Genome Program presented a review of the HGP and a recap of the first day’s proceedings. ELSI Panel A panel on Ethical, Legal, and Social Implications of the HGP for Minorities included Phyllis Epps, Esq. (Health Law and Policy Center, University of Houston Law Center); Jenifer Smith (DNA Analysis Unit, FBI Laboratory); Dr. Jeroo S. Kotval (School of Public Health, New York State University); Dr. Pamela Sankar (Center for Bioethics, University of Pennsylvania); and facilitator Jenkins (Shelton Group). Ms. Jenkins raised the issue of confidentiality of individual genetic information; uses to be made of such information; the potential for discrimination in health care, health insurance, and employment; the potential for use and misuse of genetic data in the criminal justice system; and the benefits of minority participation in clinical trials. Dr. Kotval spoke of ethical issues involved in a market-driven health care system and identified the following four principles as central: just distribution of health care, quality of care, cost-effective care, and trust. Each of these principles could be impacted by the new genetic tests and their implications. Dr. Smith explained how law enforcement officials use DNA evidence and the Combined DNA Index System (CODIS) – a collection of DNA databases from forensic laboratories around the United States. CODIS includes DNA profiles of individuals convicted of serious crimes such as rapes and homicides. These profiles are compared to those collected in other cases waiting to be solved. All states have legislation allowing the collection of DNA samples from convicted offenders. Questions were raised about the use of such evidence with respect to minorities. Ms. Epps spoke of recent advances in pharmacogenomics (the study of drug-responsive genetic variations) that have revealed drug-metabolism differences linked to race, ethnicity, and gender. As a result, drug manufacturers, researchers, and physicians will have legitimate reasons to consider race in judging the effectiveness of medicines. Given past history, patients will regard race-based treatment with suspicion, and the medical community will find it a great challenge to balance the benefits of different treatments against the risks inherent in classifying persons by race for whatever reason. Workshops Three afternoon workshops covered (1) Issues of Importance to the Minority Communities Relating to Genetic Screening, Testing, and Counseling; (2) Expanding the Pool of Minority Scientists—Genomics and its Challenge in the Education of Minorities; and (3) Minorities in the Scientific Workforce: Career Development. These workshops led to a series of recommendations. Workshop panelists and facilitators Dr. Deborah P. Wolf and Dr. Eunice Thomas, both former National Presidents of Zeta Phi Beta Sorority; Dr. Deborah L. Eunpu, Genetic Counseling Program Director, Beaver College; Zora Kramer Brown, Breast Cancer Resource Committee; Dr. Mortimer Poncz, Department of Pediatrics, Children’s Hospital; Dr. Rosalind P. Hale, Division of Education, Xavier University of New Orleans; Margaret Werner-Washburne, University of New Mexico; Valerie Hollingsworth-Davis, Atlantic Regional Director, Zeta Phi Beta Sorority; Dr. La Shawn Drew, NIH Academy Director; Dr. Lloyd Townsend, Aventis Pharmaceutical; Karen Graham, BD Company Recruitment Manager; Betty Mansfield, DOE Human Genome Management Information System; and Jamaal Murphy, University of Pittsburgh student. Workshop recommendations and concerns included the following:
Closing Session In the Closing Session conducted by Dr. Kathryn Malvern, Project Director on "What Next?" for continued minority involvement in education about genomic research developments, suggestions and comments included the following:
Leanne Washington, member of the Pennsylvania House of Representatives, was the closing luncheon speaker. She spoke of state involvement and of the important need for information in minority communities. She committed to sponsoring a statewide conference on the HGP in the fall of 2000. The Foundation has received many favorable comments on the informative conference. A number of participants expressed the desire to keep abreast of developments and contribute to policy and legislative decisions regarding genetic research and the use of genetic information. The Conference was supported by grants from the Department of Energy and the National Institutes of Health through the Ethical, Legal, and Social Issues components of their respective Human Genome Programs. The U.S. Equal Employment Opportunity Commission, Philadelphia District Office, provided assistance as a cooperating agency sponsor. Funding also was received from the March of Dimes and Merck Research Laboratories.
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The online presentation of this publication is a special feature of the Human Genome Project Information Web site. |
