E L Ryan1, C S Skinner. 1. Psychology Department, Washington University, St. Louis, Missouri, USA. ERyan@mail.med.Cornell.edu
Abstract
BACKGROUND: First-degree relatives (FDRs) of breast cancer patients are at potential genetic risk for developing breast cancer. Although FDRs are being targeted for screening and counseling, few studies have explored their beliefs about risk modification or preferences for risk counseling. METHODS: To learn more about these beliefs, the authors conducted four focus groups among FDRs (n = 29). RESULTS: Findings indicate misunderstanding about risk and interest in more information. For instance, the participants confused risk factors with causes, discounting scientific validity of risk-factor information if they knew a breast cancer victim without risk factors or with protective factors. Most FDRs thought lifestyle factors contributed to risk. The overwhelming majority thought they could reduce personal risk by lifestyle modifications. Most were not interested in genetic testing for breast cancer susceptibility, saying they would worry too much if they learned they had a mutated gene. According to the participants, lack of primary prevention techniques negates the value of genetic testing. CONCLUSION: If risk counseling for FDRs is to become more widespread, these exploratory findings should be addressed in research and program development.
BACKGROUND: First-degree relatives (FDRs) of breast cancerpatients are at potential genetic risk for developing breast cancer. Although FDRs are being targeted for screening and counseling, few studies have explored their beliefs about risk modification or preferences for risk counseling. METHODS: To learn more about these beliefs, the authors conducted four focus groups among FDRs (n = 29). RESULTS: Findings indicate misunderstanding about risk and interest in more information. For instance, the participants confused risk factors with causes, discounting scientific validity of risk-factor information if they knew a breast cancer victim without risk factors or with protective factors. Most FDRs thought lifestyle factors contributed to risk. The overwhelming majority thought they could reduce personal risk by lifestyle modifications. Most were not interested in genetic testing for breast cancer susceptibility, saying they would worry too much if they learned they had a mutated gene. According to the participants, lack of primary prevention techniques negates the value of genetic testing. CONCLUSION: If risk counseling for FDRs is to become more widespread, these exploratory findings should be addressed in research and program development.
Authors: Celette Sugg Skinner; Susan M Rawl; Barry K Moser; Adam H Buchanan; Linda L Scott; Victoria L Champion; Joellen M Schildkraut; Giovanni Parmigiani; Shelly Clark; David F Lobach; Lori A Bastian Journal: J Gen Intern Med Date: 2005-04 Impact factor: 5.128
Authors: Ellen Warner; June C Carroll; Ruth E Heisey; Vivek Goel; Wendy S Meschino; H Lavina A Lickley; Brian D Doan; Pamela L Chart; Vanessa Orr; Shelley Lothian Journal: Can Fam Physician Date: 2003-01 Impact factor: 3.275