Genetic screening poses immediate problems
for Ashkenazi Jews -- and concern for
In the end, it came down to that. At age 43, Joyce Wadler was diagnosed with breast cancer. Five years later she was battling ovarian cancer.
"It is helpful to be lucky," Wadler writes in New York (Sept. 15, 1997). "And I am not." Why me, Wadler asks? Why twice? She finds her answer in a simple blood test that revealed a mutation of her BRCA1 gene, a genetic twist that predisposed her to cancer. Some people with the BRCA1 mutation will never get either disease, but they're far more likely to than the rest of the population. Wadler got both.
Genetic testing makes sense for people like Wadler, who could have screened more aggressively for ovarian cancer to detect the disease at an earlier stage -- had the test been available six years ago -- and thus increased her chances for survival.It's also useful for couples who are planning families and want to know if they are carriers of specific inherited diseases or for anyone to confirm a difficult medical diagnosis.But genetic testing has also spawned a new form of prejudice, reports Science News (Oct. 26, 1996).
Imagine perfectly healthy people being denied a job, or insurance, because genetic testing indicated they were predisposed to some serious illness. That's what the Human Genome Project in Bethesda, Maryland, was concerned about when it commissioned a study to document genetic discrimination. Nearly one-fourth of those surveyed -- all members of support groups for various genetic disorders -- reported that they had experienced discrimination as a result of genetic testing. In fact, fear of discrimination is so widespread that at least 26 states have enacted laws to protect the confidentiality of genetic information.
But that's not enough, according to an article in Science (March 21, 1997), which points out the need for more uniform protection against the use and misuse of and access to genetic information in the workplace. The authors call for legislation that would prohibit employers from allowing genetic information to affect hiring practices. They also recommend that employers be prohibited from requesting or requiring collection or disclosure of genetic information prior to a conditional offer of employment. Jews are particularly nervous about the specter of genetic discrimination. Recent discoveries of specific mutations common among Ashkenazi Jews (those from Eastern Europe), including the BRCA1 gene and one for colon cancer, have raised fears that non-Jews will have yet one more reason to be suspicious of Jews, reports Beryl Lieff Benderly in the Jewish publication Moment (December 1997). But Jews have no more cause for alarm than any other group, Benderly argues.
The discovery of a number of bad genes doesn't mean that Jews are more prone to genetic disorders. They simply happen to be "a geneticist's dream of a research population," she writes. Marriage within the group has been the norm for 30 or more generations, a distinctive gene pool; they tend to be geographically concentrated; and they're numerous enough to provide researchers with real statistical power. Benderly's point is that we're all genetically flawed, and once the entire human genome is mapped out, nobody will be immune from genetic discrimination. The task at hand is to educate the public about the use and abuse of genetic information.Given the potential for discrimination, businesses bent on selling genetic testing information or test kits to doctors and laboratories should move slowly, according to another Science article (Oct. 24, 1997). Current federal regulations have little power to ensure the validity of genetic tests, say the authors, who call for the establishment of a national advisory committee on genetic testing.to guarantee that before tests move from the research lab to the doctor's office they be proven valid, safe, and effective.
"Decisions about using new genetic or other tests are often left to individual physicians who seldom have access to data on a test's validity and utility," the authors write. "They and their patients would benefit from having an appraisal of such data, and indications for a test's use, by an organization independent of the test developer." Which brings us back to Wadler, who, in trying to make sense of her test results, asked her doctor if anything else comes with her troublesome gene: "A house in the country? A car? A guy?" Nope, you've got it all," he told her.
Leaving aside the matter of discrimination, she did. But that's a big aside. And the question that remains is significant. Which ill will be remedied first: genetic disease or prejudice?..