LOS ANGELES (Oct. 15, 1999) -- What if you learned you had a genetic susceptibility to cancer or another potentially life-threatening disease? Would you pursue a course of preventive treatment? What if your family members were at risk? Should they also be tested? Could you possibly face discrimination from employers or insurers?
These are just a few of the questions to be explored at "Genetic Medicine and the Jewish Population: Clinical, Ethical, Legal and Psychosocial Issues," a free community conference hosted for the first time by Cedars-Sinai Medical Center Oct. 24 in the Harvey Morse Auditorium. Registration starts at 8 a.m., and the conference and panel discussions begin at 9 a.m. and continue throughout the day. A complimentary kosher lunch will be served.
Continuing advances in genetic testing and medicine have opened the doors to important preventive strategies and, at the same time, raised issues related to how this knowledge may be used by health care consumers and the community at large.
"Over the last few years, we've seen much progress in the field of genetic research and prevention," said David L. Rimoin, M.D., Ph.D, Chair, Department of Pediatrics, and Director, Medical Genetics-Birth Defects Center, Cedars-Sinai Medical Center. "Some specific gene mutations are more common among people of Jewish ancestry, though no one population-Jewish or otherwise-has more mutations or genetic diseases. They're just distributed differently among different ethnic groups."
The purpose of the conference is to provide information on the historical, clinical, ethical, legal and social issues surrounding genetic medicine in the Jewish population. These issues will be addressed by experts in medicine, law and ethics as well as by individuals who have first-hand experience with these diseases. Audience members are encouraged to participate in the dialogue.
Conference presenters include Sen. Patrick Johnston, Chair, Senate Select Committee on Genetics and Public Policy; Michael M. Kaback, M.D., Professor of Pediatrics and Reproductive Medicine, University of California-San Diego and Children's Hospital and Health Center, San Diego; Robert J. Desnick, Ph.D., M.D., Professor and Chairman, Department of Human Genetics, Mount Sinai School of Medicine, New York University; and Lois Waldman, L.L.B., Co-Director, Commission on Law and Social Action and Urban Affairs, and Director, Women's Activities for the American Jewish Congress.
Participants from Cedars-Sinai include Dr. Rimoin; Rabbi Levi Meier, Ph.D.; Jerome Rotter, M.D., Co-Director, Medical Genetics-Birth Defects Center; Maren T. Scheuner, M.D., M.P.H., Director, GenRISK Program; Helen Hixon, M.S., C.G.C., Genetic Counselor, GenRISK Program; Rena Falk, M.D., Director, Prenatal Diagnosis Center; and Barry Rosenbloom, M.D., Director, Comprehensive Gaucher Treatment Center.
A dramatic example of the positive implications of genetic medicine, Dr. Rimoin pointed out, is the decreased incidence of Tay-Sachs disease in the Jewish population. In 1971, 80 Jewish children were born each year with the disease, compared to 12-15 non-Jewish children. Thanks to screening programs, the current incidence among Jewish children has dropped to two to three a year, while the rate among non-Jewish children has held steady.
"Tay-Sachs is literally not a Jewish disease anymore, though there is still a predisposition within this population," he stated. A Jewish Genetics Center, now in the planning stages at Cedars-Sinai, will provide comprehensive medical, psychosocial and educational services to enhance targeted health care delivery and lessen potential misuse of genetic information.
"Knowledge of Jewish heritage can focus and improve clinical care and disease prevention throughout an individual's lifetime," explained Dr. Scheuner, adding that the potential for misapplication of this information has led to concerns about stigmatization and discrimination.
"Knowledge is power," stated Dr. Scheuner. "This information can be put to good use. It may provide the basis for enhanced disease prevention strategies that may be life saving. Additionally, appropriate medical therapies targeted for a specific genetic risk may be recommended.
"Unfortunately, fears about misuse of this information may keep individuals from seeking information about their genetic susceptibilities. Fortunately, there is little evidence that such discrimination exists, and legislation is in place to protect us from such discrimination, though it may not be comprehensive enough."
One of the predominant issues surrounding genetic screening is determining when it is most appropriate and for whom, according to Dr. Falk. Because genetic screening is costly, it is more efficient-and cost-effective-to define five to eight potential conditions to screen for than to perform 50 random screenings.
"Every human being carries dangerous recessive genes that 'hide' while the dominant gene takes over," explained Dr. Falk. "We can't test everybody for everything, which leads to a number of important questions. At what point do we offer genetic testing? How significant must the risk be? What if the test is positive? What are the pros and cons of treatment?"
Dr. Falk hopes that the conference will draw community members and leaders as well as health care professionals, because a growing number of patients are seeking information on genetic medicine.
Sherman Oaks resident Marcia Litt was one of them. When she was diagnosed with breast cancer at age 48, Marcia was worried about more than her medical outcome. Her fears also focused on the possibility that her children-and other family members-could develop the same disease. Marcia had already seen two of her aunts succumb to breast cancer, and began to wonder if there might be a genetic susceptibility to the disease within her family.
"I gradually became proactive about educating myself about cancer," said Marcia, who underwent a lumpectomy, lymph node surgery, radiation and chemotherapy in 1997. Initially she was afraid to explore the subject for fear of learning more than she could handle emotionally. But with time that hesitation turned to action, as she began to seek information about the disease and, ultimately, decide to pursue genetic counseling and testing through Cedars-Sinai's GenRISK program. She credits that decision with saving her life . . . and possibly the lives of those she loves.
"The testing has really been helpful to me," said Marcia, who will share her experiences as part of the conference's consumer panel. "It's good preventative medicine, and I know how to take better care of myself now. Without the screening, I wouldn't be taking these proactive steps."
Another conference participant, Lenny Van Pelt, will discuss his experiences as both a patient coping with Gaucher disease and the founder of International Patient Advocacy Association (IPAA), a not-for-profit organization that provides legal resources and support to individuals with chronic illness and rare genetic disorders. Lenny was diagnosed with Gaucher disease in 1986, and has learned first-hand the struggles patients with such conditions face each day. Approximately one in 12 people of Ashkenazi ancestry carry the gene responsible for the disease, though Lenny is actually of pure Dutch descent.
"When I was diagnosed at 27, I had always thought of myself as a healthy individual and had never considered genetic issues related to my health," said Lenny, who is also an attorney. "One of my primary goals as a patient advocate is to increase education and awareness about genetic and chronic disease among health professionals as well as society as a whole."
Another important focus is bringing those most knowledgeable and concerned about these health conditions--researchers, physicians, patients, industry, nurses, counselors and other professionals-together under one umbrella to address patient needs.
For reservations or more information about the conference, call 1-800-CEDARS-1 (1-800-233-2771).
For media information and to arrange an interview, please e-mail sandy@vancommunications.com or call 1-800-396-1002. Thanks for not including media contact information in stories.