A population-based study of Ashkenazi Jewish women’s attitudes toward genetic discrimination and BRCA1/2 testing

• Published in: Genetics in medicine Vol. 4; no. 5; pp. 346 - 352
• Main Authors: Lehmann, Lisa Soleymani, Weeks, Jane C., Klar, Neil, Garber, Judy E.
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.09.2002
• Subjects: Adolescent; Adult; Aged; Ashkenazi Jews; Boston - epidemiology; BRCA1/2; Breast Neoplasms - ethnology; Breast Neoplasms - genetics; Breast Neoplasms - psychology; Decision Making; DNA Mutational Analysis; Female; Genes, BRCA1; Genes, BRCA2; Genetic Counseling; genetic discrimination; Genetic Predisposition to Disease - psychology; genetic testing; Genetic Testing - psychology; Health Education; Health Knowledge, Attitudes, Practice; Humans; Jews - genetics; Middle Aged; Ovarian Neoplasms - ethnology; Ovarian Neoplasms - genetics; Ovarian Neoplasms - psychology; Boston; BRCA1/2; Ashkenazi Jews; genetic discrimination; genetic testing; Empirical Approach; Genetics and Reproduction
• ISSN: 1098-3600; 1530-0366
• DOI: 10.1097/00125817-200209000-00005

Purpose: The Human Genome Project continues to produce an increasing number of genetic susceptibility tests. Some of these genetic tests target social or ethnic groups who are at increased risk of developing a disease. The Ashkenazi Jewish community is one ethnic group that is an ongoing subject of genetic investigation. We assessed the attitudes of a population-based sample of Ashkenazi Jewish women toward breast–ovarian cancer susceptibility testing (BRCA1/2). In particular, we assessed concerns about group discrimination, perceptions of the advantages and disadvantages of BRCA1/2 testing, and the relationship between concerns about discrimination and the potential benefits of genetic testing. Methods: A telephone survey of a population-based sample of 200 Jewish women. Results: A minority of women (17%) in this study expressed concern or discomfort with Jews being offered BRCA1/2 testing. Most women believed there were scientific reasons for testing Jews (71%), and only 5% of women felt that research that focused on Jews was bad for Jews as a group. Increased concern about genetic discrimination was associated with women who were highly educated (odds ratio 2.68). Forty percent of women surveyed were interested in BRCA1/2 testing, 40% were not interested, and 20% were uncertain about whether they would obtain BRCA1/2 testing. Increased interest in genetic testing was associated with a desire to obtain information about children’s risk of disease and valuing information for its own sake. Conclusions: The majority of a population-based sample of Jewish women did not express concerns about group discrimination resulting from genetic testing. Women who are highly educated are more concerned about genetic discrimination. There is significant variation among Jewish women’s interest in breast cancer susceptibility testing.