November 21, 2009
UTNE READER

Is DNA Destiny?

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Genetic screening poses immediate problems
for Ashkenazi Jews -- and concern for
everyone else

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Bad luck.

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.

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