Jewish Guinea Pigs
What if a gene patent is bad for the Jews?
Late last month, the European Patent Office made a decision that a group of Israeli doctors are calling racist and anti-Semitic. The Israeli Ministry of Health is gearing up for a fight. The chairman of the Israel Cancer Association thinks the EPO ruling endangers Jewish women.
At issue is a patent that the EPO issued to Myriad Genetics, an American company. The patent covers certain aspects of the BRCA2 gene, one of two known to determine a woman's susceptibility to breast and ovarian cancer. Among other things, Myriad has patented the technology it uses to test for a deleterious mutation that vastly increases a woman's risk of developing breast or ovarian cancer. As it happens, this particular mutation is specific to Ashkenazi Jews: About 1 percent are carriers.
Actually, as it happens, a disproportionate number of all known mutations that are related to various diseases, from cancer to Tay-Sachs to congenital deafness, are specific to Ashkenazi Jews. This is because Ashkenazi Jewish genes have been studied better than just about anyone else's, with the possible exception of the Finns. So, it was inevitable that the ongoing debate about the patenting of genes and genetic technologies would eventually shift to the terrain of anti-Semitism. To the usual questions—should it be possible to patent something that is hardly invented by humans, and does the practice of issuing such patents encourage research or impede it—a novel and questionable one has been added: Is it good for the Jews?
Both Finns and Ashkenazi Jews provide terrific opportunities for research. Both populations are highly homogenous. The vast majority of Finns in the world live in one place, allowing research to occur within a single health-care system. Ashkenazi Jews, on the other hand, offer the advantage of geographical diversity: They are found everywhere and even seem to have a certain propensity for settling near major research centers.
The creepy irony of using Jews as guinea pigs—for their genes at that—has not been lost on either the researchers or Jewish community leaders. Some American rabbis have been vocal opponents of genetic research and testing, arguing that it will lead to discrimination in insurance and health care. Other American rabbis, it should be said, have enthusiastically embraced the research and introduced genetic screening programs in their communities. Israeli geneticists have in the past assumed a bit of a superior attitude toward the concerns of the American Jewish opponents. "Here we are not afraid of anti-Semitism," Dr. Michal Sagi, who runs the genetic testing program at the Hadassah Medical Center in Jerusalem, said to me earlier this year as a way of dismissing the entire area of discomfort.
Now it's the Israeli geneticists and oncologists who are sounding the alarm. Their argument is fairly straightforward. Myriad Genetics charges $500 for its test kit (in the United States, insurance companies will usually pick up the cost if the woman has a family history of the cancers, is of Ashkenazi descent, and otherwise looks like she may well have the mutation). A similar kit costs just $70 in Israel, and in most cases one of the national health funds picks up the cost. Myriad is trying to enforce its patent worldwide, and winning the EPO ruling is an integral part of this fight. If Israel is forced to use Myriad's patented kit, it may have to cut back on the number of tests Israel's national health-care system provides—say, by restricting reimbursement to women who have several relatives with the relevant cancers. As a result, some women who have the mutation may not be tested.
Is this really racist, in the sense that Jews are being set apart because of their ethnicity? "Well, if you do something that might hurt only a certain population, what do you call it?" says professor Eliezer Robinson, chairman of the Israel Cancer Association and one of the authors of a letter to the EPO opposing the Myriad patent. His argument may sound abstract now, but a few years down the road something resembling discrimination may in fact take shape. Several dozen apparently deleterious mutations have been identified in the BRCA genes but have not yet been extensively studied. But once that changes and testing for them becomes meaningful, Myriad or another company may have a much more difficult time patenting the new tests, now that the patenting of genes has become controversial. That would mean that being tested for the "Ashkenazi" mutation for breast cancer (using a patented test) may be several times more expensive than being tested for a "Dutch" or "African-American" mutation. That would certainly seem unfair to the Jews.
On the other hand, Ashkenazi Jews are among the first to benefit from genetic medicine. A Jewish woman whose mother, grandmother, and maternal aunt all had breast cancer can be tested for one of the three known "Jewish" mutations. If she tests negative for all of them, she can probably feel legitimate relief: Chances would be very good that she escaped her ill inheritance. If she tests positive for one of the mutations, on the other hand, researchers will be able to tell her quite a lot about her level of risk and the age at which the risk becomes significant. Then she can decide whether to have preventive surgery or to opt for frequent mammograms, MRIs, blood tests, and other methods of surveillance; either way, she will probably substantially reduce her risk of dying of cancer.
An African-American woman with a similarly strong family history of breast cancer may also be tested for mutations in the BRCA genes. But the results will tell her little: If no mutation is found, this may just mean that her family carries a mutation in some other gene that also influences the risk of breast cancer. If a mutation is found, it will be one about which little is known. So, the woman will have to base her decisions purely on her family history, with no help from her genetic test results. What's more, at present the African-American woman's blood test will be more expensive, since she will have to be tested for any and all mutations, not just for the specific three known "Ashkenazi" mutations. Is that racist?
Then again, Ashkenazi Jews in Israel and elsewhere are giving something in return for the benefits they're currently reaping. Everything we know about the effect of current accepted prevention strategies for breast and ovarian cancer—prophylactic mastectomies and oophorectomies—comes primarily from Jewish women who have had their breasts and ovaries removed. Some years down the road, we may just find out that these surgeries did more harm than good. That's simply the way medical research works: A recent study published in the Journal of the American Medical Association found that a third of all studies published in the three major American medical journals since 1990 claimed that treatments worked when, it turns out, they don't—or at least not as well as billed. So, it may be that Jewish women have been cutting off their breasts and rendering themselves infertile in vain. But then what if the current thinking is on target and the preventive surgeries really work? That may mean Jews have gotten an unfair medical advantage.
Masha Gessen is the author of The Man Without a Face: The Unlikely Rise of Vladimir Putin, and several previous books. She has contributed to Vanity Fair, Newsweek, and Slate, among many other publications, and has served as editor of several magazines. She lives in Moscow.