Clinical studyDisclosure of familial genetic information: perceptions of the duty to inform☆
Section snippets
Sample
This is part of a project that is assessing interest in testing for breast cancer susceptibility genes BRCA1 and BRCA2 (BRCA1/2) and concerns about genetic discrimination among Jewish women, who were selected because they have an increased frequency of BRCA1/2 mutations 26, 27, 28. The sample for this study was a subset of respondents to a 1995 demographic survey of 1,200 Jewish families in the Boston metropolitan area (29) that consisted of a random sample drawn from a list of likely Jewish
Results
The mean (± SD) age of the respondents was 46 ± 11 years and the mean BRCA1/2 knowledge score (on a scale of 0 to 7) was 4.0 ± 1.4 (Table 1). Seventy-five percent of women had graduated from college. Approximately two thirds of the sample were married and had children, and about one quarter had a history of amniocentesis.
Discussion
We found that women’s attitudes toward disclosure of genetic information to family members differed depending on whether the disease was preventable. A greater proportion of women believed that they should share genetic information with family when the disease was preventable than when it was not. The majority of women in this survey, however, did not believe that physicians should seek out and inform at-risk family members against a patient’s wishes. This result remained stable whether the
Acknowledgements
We would like to thank Daniel Singer, MD, Philip Reilly, MD, JD, and Ellen Clayton, MD, JD, for their thoughtful comments on this manuscript.
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Cited by (0)
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Supported by a National Research Service Award training grant (Dr. Lehmann) and a grant from the Woman’s Cancer Program at the Dana-Farber Cancer Institute.