M Jane Lewis1, Susan K Peterson. 1. University of Medicine and Dentistry of New Jersey, School of Public Health, Piscataway, NJ, USA. lewismj@umdnj.edu
Abstract
BACKGROUND: Clinical genetic testing can help identify individuals who are predisposed to a variety of diseases and conditions; thus, it is important to understand attitudes and perceptions of individuals who may consider or who may be offered such testing. METHODS: We examined knowledge and attitudes about cancer genetic testing among 59 women of Ashkenazi Jewish descent (age 25-80 years) through six focus group discussions. Participants were asked about their knowledge and experience with hereditary conditions and genetic testing, and attitudes regarding risk management options, genetic privacy, and potential discrimination issues. RESULTS: Although 54% reported having a personal and/or some family history of breast, ovarian, or colorectal cancer, none had undergone cancer genetic counseling or testing and few expressed an interest or intention in doing so. While most endorsed benefits of genetic testing for those with a significant cancer family history, women also expressed concerns over the possible distress of learning that one carried a cancer-predisposing mutation and suggested that increasing cancer screening practices may be preferable to having genetic testing. Participants doubted the ability of state genetic privacy legislation to protect against insurance or employment discrimination. CONCLUSION: Findings underscore the need for public education on the broad range of benefits and limitations associated with genetic testing, in order to help consumers to appropriately interpret complex information and make decisions about these services. Copyright 2007 S. Karger AG, Basel.
BACKGROUND: Clinical genetic testing can help identify individuals who are predisposed to a variety of diseases and conditions; thus, it is important to understand attitudes and perceptions of individuals who may consider or who may be offered such testing. METHODS: We examined knowledge and attitudes about cancer genetic testing among 59 women of Ashkenazi Jewish descent (age 25-80 years) through six focus group discussions. Participants were asked about their knowledge and experience with hereditary conditions and genetic testing, and attitudes regarding risk management options, genetic privacy, and potential discrimination issues. RESULTS: Although 54% reported having a personal and/or some family history of breast, ovarian, or colorectal cancer, none had undergone cancer genetic counseling or testing and few expressed an interest or intention in doing so. While most endorsed benefits of genetic testing for those with a significant cancer family history, women also expressed concerns over the possible distress of learning that one carried a cancer-predisposing mutation and suggested that increasing cancer screening practices may be preferable to having genetic testing. Participants doubted the ability of state genetic privacy legislation to protect against insurance or employment discrimination. CONCLUSION: Findings underscore the need for public education on the broad range of benefits and limitations associated with genetic testing, in order to help consumers to appropriately interpret complex information and make decisions about these services. Copyright 2007 S. Karger AG, Basel.