Effects of risk counseling on interest in breast cancer genetic testing for lower risk women

Abstract

Purpose: A randomized trial was conducted to test the effects of two counseling methods (genetic counseling and group counseling) against a control no-intervention condition on interest in genetic testing in lower risk women.Methods: After completing baseline surveys, women (N ϭ 357) were randomized to one of three conditions: to receive individual genetic risk counseling, to receive a group psychosocial group counseling, or to serve as a control group. Participants completed follow-up questionnaires 6 months after randomization. Results: All participants had some familial history of breast cancer, but none had a family history indicative of autosomal dominant genetic mutation. At baseline over three fourths of the sample judged themselves to be appropriate candidates for testing.By the end of the survey, two thirds (70%) of the women in the counseling group still judged themselves to be appropriate candidates for testing. Findings were similar for interest in genetic testing. Changes in beliefs about genetic testing (e.g., beliefs about potential stigma associated with testing) altered the effects of counseling. Conclusion:These results indicate that counseling can change interest in genetic testing only slightly and that changing women's beliefs about the properties of testing might be one mechanism of doing so. Genet Key Words: genetic testing, risk information, breast cancer risk counselingGenetic mutation testing to determine breast cancer risk is a relatively recent clinical option. Mutations in the BRCA1 and BRCA2 genes were discovered in 1995 to confer a relatively high risk of breast cancer in women with a strong family history of breast cancer. 1,2 This type of genetic testing was offered to the public through physicians beginning in 1997. The low prevalence of the mutation in the general population combined with the difficulty in interpreting test results to any family except a high-risk family has caused most policy-making bodies to limit clinical testing to individuals with breast cancer and their family members in families with strong genetic histories. [3][4][5][6] The extent to which genetic mutation testing is currently being used and will be used clinically in the near future is unknown. Several surveys of women from diverse samples indicate high interest, ranging from 55 to 80% of the respondents interested in obtaining testing. [7][8][9][10] This high level of interest is astounding, as most women from the general public are not seen as appropriate medical candidates for breast cancer genetic testing. The few studies that have assessed actual use of the test indicate much lower uptake, as low as 10 to 20% in clinical studies. 11 The reasons for this high interest and the potential methods of reducing it to more medically realistic levels are the topic of this article.Contact with a counselor trained in assisting with risk-understanding could assist women in choosing their personal options for genetic mutation testing. We conducted a randomized trial to test the effects of two counseling type...

Genetic testing for BRCA1: effects of a randomised study of knowledge provision on interest in testing and long term test uptake; implications for the NICE guidelines

“…However, the populations examined in these studies were different from ours: most women in three of the studies had a low or moderate risk of breast cancer, whereas women in our study were mainly high risk [15,31,32]. In the fourth study, Green et al [17] showed that education and counselling increased knowledge and reduced inclination to undergo testing in low risk, but not high risk women.…”

Deriving Lay Models of Uncertainty About Genes' Role in Illness Causation to Guide Communication About Human Genetics

“…Gaps in understanding may lead to ineffective genetic counseling and health promotion communication derived from focus on a specific disease and links to human genetics. Evidence supports the conclusion that lay audiences who overestimate the genetic contribution to health make less personal effort to control modifiable cofactors of disease, while underestimation contributes to frustration in the face of failure to control health processes and outcomes (Bowen, Burke, Yasui, McTiernan, & McLeran, 2002). To increase the heuristic value of problematic integration theory, situations such as the one described afford important contexts in which to assess the meaning of uncertainty.…”

Effects of a Web-based intervention on women’s breast health behaviors

“…We based the content of this intervention on the self-regulation model developed by Leventhal and colleagues [35] applied to women at risk for breast cancer [4, 5, 36]. The self-regulation model of health behavior addresses health risk communications and the use and effects of health screening.…”

“…Mixed-risk women either had reported a specific mixed-risk factor for breast cancer or reported a cancer worry score of 8 or over. We used the data in our previous research to determine a “high” worry score, indicating women who might need more intensive assistance [4, 5]. Genetically at risk women had a relatively high family history of breast cancer suggestive of possible positive genetic mutation status [37, 38].…”