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Toward a Framework of Mutualism: The Jewish Community in Genetics Research

Rothenberg K.H.a · Rutkin A.B.b
a University of Maryland School of Law, Baltimore, Md., and b Hadassah, New York, N.Y., USA Community Genet 1998;1:148–153 (DOI:10.1159/000016154)

Abstract

The ability of scientists to identify genes believed to cause inherited diseases, including familial cancers, has become considerably refined over the last two decades because of technological breakthroughs. When research published in 1995 appeared to show that genetic mutations linked to breast and ovarian cancers (BRCA1 and BRCA2) occur more frequently in Jews of Eastern European descent than in the general population, the first response among Jewish women was to rush to participate in research. When a gene linked to colorectal cancer was identified in 6% of the Jewish population in 1997, however, press reports began to carry inaccurate and inflammatory headlines about Jewish ‘mutant gene carriers’, raising fears of discrimination and loss of privacy. Some rabbis and other leaders of the Jewish community began to quietly advise Jews not to get a genetic test or participate in genetics research until legal protections against discrimination are established. At the present time, a subtle tension is developing between the Jewish tradition of encouraging the acquisition of knowledge, particularly medical knowledge (exemplified by the community’s successful collaboration with genetic researchers when tests for Tay-Sachs disease were developed in the 1970s) and the fear of potential discrimination or stigmatization. In order to address this tension, and ensure the continued participation by the Jewish community in critical genetics research, a framework based on the mutual interests of researchers and participants should be formulated. Such a framework of dialogue and policy would be useful in building an important element of trust for the Jewish community and other distinct communities who are sought for such research.

 

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