Genetic finding on deafness raises host of ethical questions

WASHINGTON, Nov. 22 (JTA) – A new medical finding regarding a genetic mutation that causes deafness among Ashkenazi Jews is raising several practical – and ethical – implications for the Jewish community. The research, published in the Nov. 19 issue of the New England Journal of Medicine, shows that a recessive gene found in 4 percent of all Ashkenazi Jews is likely to be a source of hereditary deafness. Those carrying the mutation in the connexin 26 gene, which can produce a protein that causes hearing loss, may not suffer hearing loss themselves. But when paired with another carrier, they could parent a deaf child, researchers said. The researchers stress the study’s findings should not be a cause for alarm in the Jewish community, but rather a step toward understanding more about a condition that affects about 1 in 1,000 Jews, the same as in the general population. “The frequency of deafness is no higher in the Jewish population than in others,” said Dr. Bronya Keats, director of the Molecular and Human Genetic Center at the Louisiana State University Medical Center in New Orleans and research coordinator for the project. “It’s just that in the (Ashkenazi) Jewish population, many profound hearing impairments are due to a certain gene mutation.” Despite this fact, some Jews fear that discovery of the gene within their families could lead employers and health insurance companies to deny them medical coverage on the basis of having a pre-existing condition. Keats cited problems encountered in recent years by women who wished to be screened for the BRCA 1 and BRCA 2 gene mutations, which occur at a higher rate among Ashkenazi Jewish women and can lead to a heightened susceptibility to hereditary breast cancer. “Women want to be tested, but know their family could lose insurance if they’re found with the genes,” Keats said. Indeed, recognizing the possible implications for health insurance, the researchers concealed the cities the families lived in and even altered some subjects’ family trees in the journal in an effort to preserve anonymity. Such anxiety persuaded Hadassah – The Women’s Zionist Organization of America to address the National Institute of Health’s forum on genetics research in April and again this week. “We are working to ensure that potential research groups are not scared off or harmed by the real and perceived risks of participation,” said Marlene Post, the national president of Hadassah. The study, like others that have focused on Ashkenazi Jews, concentrated on the community because it has married within its cultural borders for centuries, which makes genetic research more valid and traceable. This fact raises an important question for the sectors of the Orthodox community that engage in matchmaking. Family members worry that if it is known that their relatives possess a genetic mutation, it might be difficult to arrange a marriage for them. Dor Yeshorim, a group in Brooklyn that offers genetic testing for prospective couples, has already received requests for genetic testing from families in which deafness has occurred. But the organization’s director has been quoted as saying that he does not know if Dor Yeshorim would offer testing for the deafness gene when it becomes available. Others worry that expecting parents will have their fetuses tested, which could cause some prospective parents to opt for abortions. But some hearing-impaired Jews say that would not worry them. “You’d be more likely to find that issue among hearing parents,” said 80-year-old Bess Hyman, whose own hearing deteriorated from birth. “I think most parents would want a child – deaf or not.” Hyman belongs to Temple Beth Solomon in Southern California, a congregation founded in the 1960s by hearing- impaired Jews. “The deaf community doesn’t consider deafness a disability,” said Jan Seeley, an administrator at the temple. Students at Gallaudet University, a college for the deaf in Washington. are excited about the possibilities of finding out what caused them to become hearing impaired, said Dr. Kathleen Arnos, a medical geneticist and associate professor of biology there. But Gallaudet students have mixed feelings about the prospects of a potential prenatal diagnosis of deafness, Arnos said. “It is certainly a little frightening for the students,” Arnos said. “Some think the matter should be left alone, others wonder if the number of deaf babies born will eventually decrease.”