Who Gets Tested for BRCA, and Why?

Study Examines Cultural Attitudes Toward Genetic Testing in Ashkenazi Women

By Adam Marcus

Published August 15, 2003, issue of August 15, 2003.
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Many Jewish women of Ashkenazi origin face an increased risk of inherited breast and ovarian cancers, the result of mutations in two genes that became relatively common to Eastern Europeans. Women with bad copies of either gene, called BRCA1 and BRCA2, have a lifetime risk of breast cancer that approaches 85%. Their overall risk of ovarian cancer can reach as high as 60%, according to the National Cancer Institute.

Tests for the dangerous mutations are readily available, and many women have opted to undergo the screening. Although ovarian tumors are difficult to detect early, regular mammograms can pick up breast tumors in highly treatable stages.

Both scientific tools have the same goal in mind: preventing deaths from cancer. Yet to Jewish women, the two exams may not be so equal after all. A new study finds that while secular and religious Jews go for mammography screenings at the same rate, when it comes to genetic testing for breast cancer, religious Jews are more likely to balk.

“We’re not altogether sure what to make of that effect,” said Wylie Burke, a noted genetics researcher at the University of Washington and a collaborator on the research effort.

To be sure, neither religious Jewish identity or cultural Jewish identity is easy to define. But for the sake of simplicity, the researchers used scales to determine how many women in their study belonged in either camp. Women moved up the religion scale if they were involved with a synagogue or worshipped in other ways; their cultural meter moved if they were involved in Jewish, but nonreligious, community groups and activities. All of the women, whose ages ranged from 18 to 74, were of Ashkenazic descent and lived in Washington state.

Women in the study tended to identify slightly more strongly as cultural Jews than as observant ones.

The researchers found no difference in the willingness to perform self-examinations of the breasts among either group of women. However, those with a stronger religious identity were more likely to say that they would adhere to mammography recommendations than the others. At the same time, they were less likely than the other women to say they’d undergo genetic testing to see if they carried BRCA1 or BRCA2 cancer mutations.

Burke, whose study appears in Cultural Diversity and Ethnic Minority Psychology, believes the difference may reflect a greater awareness among culturally identified Jews of matters in science and medicine that affect them. Women who consider themselves strongly religious, on the other hand, “may be less connected with a public discourse” on these issues, Burke said.

Possibly, she and her colleagues add, some rabbis may neglect to raise these topics with their congregations. “If rabbis are uninformed about genetic testing for breast cancer or do not approve of such testing,” they write, “fewer religious women may be inclined to obtain genetic testing.”

Rochelle Shoretz, a breast cancer activist in New Jersey, agrees that a powerful sense of Jewish cultural identity may create a heightened understanding of the relevance of genetic history for health. However, she does not put much stock in the notion that rabbis are to blame.

Rather, according Shoretz, who is Orthodox, religious women have two significant concerns regarding genetic testing: They worry about the impact the result of the test may have on their families. “In particular they’re concerned about the potential of a positive result to interfere with their children’s ability to marry because of the perception of a ‘tainted’ gene pool,” she said.

The second main fear is whether their choices in the wake of a positive result conflict with Jewish law. “Depending on the rabbi, there definitely are different ideas about what kind of prophylactic surgery is acceptable when you’re not actually faced with cancer,” Shoretz said. “I haven’t come across a rabbi who would say don’t go for surgery if you have cancer, but the genetic test is a murky area.”

Shoretz is the founder of Sharsheret, Hebrew for “chain,” a nonprofit group devoted to women with breast cancer. Shoretz, 31, was diagnosed with the disease three years ago and decided to start up the foundation to meet the needs of other Jewish women with breast cancer.

Sharsheret has two goals, Shoretz said. One is to promote genetic counseling and testing for breast cancer; the other is to build an infrastructure to help women deal with the consequences of seeking counseling and testing.

Jessica Rispoli, a genetics counselor at New York’s Mount Sinai School of Medicine, said religious faith typically doesn’t enter her conversations with women — though after considering the latest research, she said, that may change. But those who seek an appointment with Rispoli are women who don’t have a spiritual conflict with genetic testing to begin with. “Most of the women that I see have at least some vested interest in learning more about genetic testing,” Rispoli said.

While she never has done a formal survey, Rispoli said most of the women she sees are moderately religious but not devout. How faith and culture inform a woman’s decision to seek genetic testing is something she would like to see examined further. “I’d be curious to know why one kind of identity might help a woman decide whether or not genetic testing is for her, and what kind of barriers there are to prevent women from seeking genetic counseling,” she said. “That might help other professionals in my position learn how to best counsel women.”

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