PITTSBURGH, February 21, 1997 — Genetic testing is a double-edged sword. It empowers individuals and families to learn whether they are at increased risk for developing disease. Yet genetic information has medical, legal and ethical dimensions that forever alter people's lives. Individuals within many ethnic communities are particularly fraught with concern about inherited genetic alterations that give rise to life-threatening disorders. For example, breast cancer, sometimes caused by changes in the genes BRCA1 and BRCA2, as well as inherited degenerative metabolic disorders such as Tay-Sachs Disease and Gaucher Disease, are more prevalent in the Jewish community.
The Jewish Healthcare Foundation has awarded a grant of $100,000 to the University of Pittsburgh Medical Center (UPMC) in response to the growing need for public and professional awareness and education about genetic testing, counseling and services.
"We are gratified to receive this grant from the Jewish Healthcare Foundation, which for years has been an active partner with the University of Pittsburgh Medical Center in supporting healthcare research and fostering community awareness of the latest advancements in medicine," remarked Thomas Detre, M.D., senior vice chancellor for Health Sciences, University of Pittsburgh. "This grant will help provide an integrated approach to addressing the medical and social dimensions of this rapidly evolving specialty."
The grant will support the development of educational materials to answer questions related to hereditary disease, raise discussion on the need for policies to safeguard individuals from misuse of genetic information and foster conversation on how a community responds to technological advances that are occurring more quickly than changes in policy and care practices.
"Our genetics counseling program is among the first and most highly regarded in the country," noted John Mulvihill, M.D., director of the joint cancer genetics program of the UPMC and Magee-Womens Hospital and professor of human genetics. "We have an excellent cadre of specialists who have taken care of patients and families facing some of the most difficult genetic disorders."
"Rather than acquiescing to the notion of unchangeable genetic destiny, we believe that gene testing is best used as a vehicle to help empower people to take a proactive approach to their health and seize control over those factors which are changeable," said Karen Feinstein, Ph.D., president of the Jewish Healthcare Foundation. "We must provide counseling for all phases of genetic education, evaluation and testing to deal with emotional issues and also to emphasize that both positive and negative test results necessitate continued health care screening."
In addition to providing much-needed genetics services for the general public, the UPMC, the University of Pittsburgh Cancer Institute, and the University of Pittsburgh's Institute of Politics and Center for Medical Ethics will conduct educational sessions for healthcare professionals and policy makers at the state and local levels, as well as foster ongoing work with other biogenetics centers and the National Institutes of Health on the ethical, social and legal implications of genome research.