Since LILITH’s last major report on breast cancer [“How Risky Is It to Be Jewish?”, Spring 1994], geneticists have found that Jewish women of Ashkenazi (eastern European) descent are significantly more likely than other women to carry either one of two newly discovered breast cancer genes (BRCA-1 and -2). These much-publicized findings have triggered enormous anxiety, as Jewish women try to navigate the uncharted waters of testing and diagnosis.
Mary-Claire King, a pioneering molecular geneticist at the University of Washington responsible for isolating and identifying the gene known as BRCA-1, declares that we are living now in “a purgatorial period.” She says, “We can calculate what the statistical risks are, but we cannot determine whether or not the disease will begin. Nor is there any prevention or cure short of having both your breasts and your ovaries surgically removed.”
Responding to the confusion, American Jewish Congress’s Commission for Women’s Equality recently hosted in New York the “First Leadership Conference on Jewish Women’s Health Issues,” a stellar day-long gathering on “Understanding the Genetics of Breast Cancer: Implications for Treatment, Policy and Advocacy.”
The program was praiseworthy for: the quality of the information presented, the fact that the presenters included geneticists actually working on the mutations known as BRCA-1 and BRCA-2, the presence in the audience of scientists drawn by the outstanding program, and, finally, the fact that the women who addressed the gathering spoke both with authority and with feeling. King, for example, “speaking as a woman,” noted that women worries about breast cancer suffered at the hands of “a patronizing medical and bio-ethics establishment (of which I am a part), opportunistic businesses, and a malevolent insurance industry.
Beginning with the genetics, renowned molecular biologist Maxine F. Singer reminded the audience that most people who develop breast cancer (including Jews) have normal genes. Less that 10% of all breast cancer cases are inherited. And while people with the gene have a susceptibility to breast or ovarian cancer, not all who carry the gene will get the disease.
So are Jewish women at increasing risk for breast cancer? Mary-Claire King tells the conference, “I think not. There is the same rate of breast cancer in Jewish women as with all American women—women with a good [i.e.. plentiful] diet, early onset of menstruation and a late first pregnancy. Being Jewish does not predispose one to breast cancer for genetic reasons.”
Why does the gene mutation for breast cancer show up more frequently in Jews? “Jewish women are where the mutations appear in their most coherent form,” says King, because of “the cultural history of this group in America” [the relative cohesiveness of the Jewish gene pool].
An extensive family history of breast cancer dictates who should be tested for the breast cancer genes. But the greatest danger from the simple blood test may be the risk of having the results known by others—what one speaker termed the “genetic discrimination.” For example, insurance companies can ask for a family history before determining whether to pay a claim. “We might ask if a genetic test was ever done in the past; we just wouldn’t ask you to do it now,” said Stephanie W. Kanwit, an attorney with Aetna Life Insurance Co. “Insurance companies just want a level playing field.” Which means they do not support legislation proposed in several states which would disallow questions about the results of genetic testing in determining insurance awards.
Until there are legal safeguards against such discrimination, said Karen Rothenberg, Professor of Law at the University of Maryland Law School, some women will not get tested for fear that they or their families will, as a result, be denied insurance coverage. Part of the conundrum is that even without asking explicitly for test results, insurance carriers can still ask about family history, an oblique way of getting at genetic data. Even if results from screenings conducted by the National Institutes of Health (N.I.H.) remain confidential, and the N.I.H. won’t tell, if an insurance company asks you for the results, you‘ll know the answer.
Insurance companies aren’t the only bad guys. Private hospitals and clinics have stepped up their pitches to test Jewish women for the breast cancer genes. Such testing may not be accurate, warned scientists, plus little or no genetic counseling may be offered, and no guarantee of confidentiality. If you want to be tested, said Richard Klausner, head of the National Cancer Institute of the N.I.H., make sure you use a facility that is participating in the large scale N.I.H. protocols. To find a site near you, call 1-800-4 CANCER (422-6237).
Since the connection between carrying the gene and getting the disease is truly unknown, why be tested at all? A personal benefit would be, for example, if you have had a family history of breast cancer and found out you were not carrying the genetic mutation, you might spare yourself considerable anguish and possibly unnecessary prophylactic surgery. Another reason to be tested is purely altruistic: since Ashkenazi Jewish women constitute a very useful genetic pool, women of this background could offer themselves as guinea pigs, as several thousand have done, anonymously, in Washington. D.C. The advantage, scientifically, is that previous large-scale genetic screening has been done with women who were already in a high risk group–part of a family with four or more women with breast cancer.
Mary-Claire King suggests that a population-genetics approach would be to screen Jewish women for the gene and then see–“who of the women who carry the mutation actually get cancer. We need to compare women carrying BRCA-I who do get cancer with women in their families who don’t get cancer, and then ask questions about their lives to see what factors might be environmental.”
For excellent background (and foreground) information about the medical, ethical and legal issues now swirling around the issue of genetic testing for breast cancer, order the materials distributed to conference participants, including a fact sheet from the N.I.H. on BRCAl entitled “What Does This Mean for Jewish Women?” Send $12 to Lois Waldman, American Jewish Congress Commission for Women’s Equality. 15 East 84 St., New York NY 10028.