PATIENTS ATTITUDES ABOUT AUTONOMY AND CONFIDENTIALITY IN GENETIC TESTING FOR BREAST-OVARIAN CANCER SUSCEPTIBILITY

The identification of BRCA1 and BRCA2, two breast-ovarian cancer susce ptibility genes, has brought many ethical and social issues to the for efront, This paper presents the results of a survey assessing the atti tudes of 238 unaffected first-degree relatives of women with breast or ovarian cancer regarding the ethical issues of autonomy and confident iality as they relate to BRCA1/2 testing, Baseline knowledge about BRC A1/2 and ethnic and psychosocial characteristics of our study populati on were examined to determine their-association with women's attitudes , The majority of women (86-87%) felt that health care providers shoul d not disclose the results of genetic tests for breast-ovarian cancer susceptibility to insurance companies or employers without written con sent; however, only 56-57% felt that written consent should be require d for a spouse or immediate family to receive this information. Ninety -eight percent of the women surveyed agreed that genetic testing for b reast-ovarian cancer-risk should be voluntary. Likewise, most women (9 5%) agreed that a person should be able to have genetic testing agains t a doctor's recommendation and 88% of the women surveyed agreed that parents should be able to consent to genetic susceptibility testing on behalf of their minor children. African American women were less conc erned than Caucasian women about the protection of confidentiality in families, they were more likely to agree that an individual should sti ll have access to testing when their physicians recommended against it , and they were more supportive of parents' rights to consent to genet ic predisposition testing an behalf of their miner children, Women wit h coping styles characterized by higher optimism were more likely to f avor access to genetic testing when a physician recommended against it , and to support parents' rights to consent to testing of their minor children. Therefore, the setting and manner in which genetic counselin g and testing are delivered must be appropriately tailored to reflect these attitudinal differences and preferences. (C) 1997 Wiley-Liss, In c.