Objectives. —To identify predictors of utilization of breast-ovarian cancer susceptibility ( BRCA1 gene) testing and to evaluate outcomes of participation in a testing program. Design. —Prospective cohort study with baseline interview assessment of predictor variables (eg, sociodemographic factors, knowledge about hereditary cancer and genetic testing, perceptions of testing benefits, limitations, and risks). BRCA1 test results were offered after an education and counseling session in a research setting. Outcome variables (including depression, functional health status, and prophylactic surgery plans [follow-up only]) were assessed at baseline and 1-month follow-up interviews. Participants. —Adult male and female members (n=279) of families with BRCA 1 -linked hereditary breast-ovarian cancer (HBOC). Results. —Of subjects who completed a baseline interview (n=192), 60% requested BRCA 1 test results (43% of all study subjects requested results). Requests for results were more frequent for persons with health insurance (odds ratio [OR], 3.74; 95% confidence interval [CI], 2.06-6.80); more first-degree relatives affected with breast cancer (OR, 1.59; 95% CI, 1.16-2.16); more knowledge about BRCA1 testing (OR, 1.85; 95% CI, 1.36-2.50); and indicating that test benefits are important (OR, 1.45; 95% CI, 1.13-1.86). At follow-up, noncarriers of BRCA1 mutations showed statistically significant reductions in depressive symptoms and functional impairment compared with carriers and nontested individuals. Individuals identified as mutation carriers did not exhibit increases in depression and functional impairment. Among unaffected women with no prior prophylactic surgery, 17% of carriers (2/12) intended to have mastectomies and 33% (4/12) to have oophorectomies. Conclusions. —Only a subset of HBOC family members are likely to request BRCA 1 testing when available. Rates of test use may be higher in persons of a higher socioeconomic status and those with more relatives affected with breast cancer. For some high-risk individuals who receive test results in a research setting that includes counseling, there may be psychological benefits. More research is needed to assess the generalizability of these results and evaluate the long-term consequences of BRCA1 testing. ( JAMA . 1996;275:1885-1892)

https://jamanetwork.com/journals/JAMA/articlepdf/404205/jama_275_24_036.pdf

BRCA1 testing in families with hereditary breast-ovarian cancer. A prospective study of patient decision making and outcomes.

Question: How have theorists and empirical researchers treated the human tendency to avoid discomforting information?

Data Sources: A historical review (1890–2004) of theory literature in communication and information studies, coupled with searches of recent studies on uptake of genetic testing and on coping strategies of cancer patients, was performed.

Study Selection: The authors' review of the recent literature included searches of the MEDLINE, PsychInfo, and CINAHL databases between 1992 and summer of 2004 and selective, manual searches of earlier literature. Search strategies included the following subject headings and key words: MeSH headings: Genetic Screening/psychology, Decision Making, Neoplasms/diagnosis/genetics/psychology; CINAHL headings: Genetic Screening, Genetic Counseling, Anxiety, Decision Making, Decision Making/Patient; additional key words: avoidance, worry, monitoring, blunting, cancer. The “Related Articles” function in MEDLINE was used to perform additional “citation pearl” searching.

Main Results: The assumption that individuals actively seek information underlies much of psychological theory and communication practice, as well as most models of the information-seeking process. However, much research has also noted that sometimes people avoid information, if paying attention to it will cause mental discomfort or dissonance. Cancer information in general and genetic screening for cancer in particular are discussed as examples to illustrate this pattern.

Conclusion: That some patients avoid knowledge of imminent disease makes avoidance behavior an important area for social and psychological research, particularly with regard to genetic testing.

/pdf/avoiding-versus-seeking-the-relationship-of-information-1krfnlb7ik.pdf

Avoiding versus seeking: the relationship of information seeking to avoidance, blunting, coping, dissonance, and related concepts.

Objectives. This paper examines the knowledge, opinions, and predictors of interest in genetic testing for breast cancer risk in a demographically diverse group of women in western Washington who participated in a randomized controlled trial (RCT) of breast cancer risk counseling methods.

Materials and Methods. Four groups of women were surveyed, all with some family history of breast cancer: ( a ) 307 white women; ( b ) 36 African-American women; ( c ) 87 lesbian/bisexual women; and ( d ) 113 Ashkenazi Jewish women. As part of the baseline questionnaire for the RCT, participants were asked about their familiarity with genetic testing for breast cancer risk, their interest in such testing and opinions of it, and actions they anticipated based on test results.

Results. Women in all four groups favored ready access to testing, believed the decision to be tested should be a personal choice, believed that genetic test results should stay confidential, and were not greatly concerned that this might not be possible. Women anticipated using such genetic test results to increase the frequency of various breast cancer screening methods (in all four groups, >69% would increase mammogram frequency, >85% would increase clinician exam, and >92% would increase breast self exam). Women overwhelmingly rejected prophylactic surgery as a preventive measure (in all >80% probably or definitely would not consider it). Significant predictors of interest in genetic testing for cancer risk included perceived risk, cancer worry, and beliefs about access to testing.

Conclusions. These data will be of interest to health care providers, payers, public health professionals, legislators, and others as they consider issues associated with population testing for susceptibility to common diseases such as breast cancer.

https://cebp.aacrjournals.org/content/cebp/8/4/369.full.pdf

Attitudes and Interest in Genetic Testing for Breast and Ovarian Cancer Susceptibility in Diverse Groups of Women in Western Washington

Perceived disadvantages and concerns about abuses of genetic testing for cancer risk: differences across African American, Latina and Caucasian women

There has been very little research exploring the relationships among perceptions of, and concern about, getting breast cancer and interest in genetic testing for breast cancer among African-American women with and without a family history of breast cancer. This study explored these issues among 130 and 136 African-American women with and without a family history of breast cancer, respectively. Women with a family history reported having greater perceived breast cancer risks and concerns than women without a family history of breast cancer. Knowledge of breast cancer risk factors was very poor and correlated weakly with perceptions of risk and concern. In attributional analyses, acknowledging one's family history status was the strongest predictor of perceived risk only among women with a family history. Women with a family history of breast cancer expressed greater interest in genetic testing for breast cancer susceptibility than women without a family history, although interest in testing was high overall. Increasing perceptions of breast cancer risks and concerns were related to a greater interest in genetic testing, and this relationship was not moderated by family history status. Attributions of risk and knowledge of breast cancer risk factors generally were not related to interest in testing. Overall, these results suggest that: (a) African-American women with a family history are more concerned about and do recognize their greater risk of breast cancer; (b) knowledge of risk factors and attributions of risk are not directly related to interest in genetic testing; and (c) concerns, rather than beliefs about one's risk, are more powerfully related to interest in genetic testing, independent of family history status.

https://cebp.aacrjournals.org/content/cebp/8/6/533.full.pdf

Relationships among Breast Cancer Concern, Risk Perceptions, and Interest in Genetic Testing for Breast Cancer Susceptibility among African-American Women with and without a Family History of Breast Cancer

Four hundred eighty-four patients undergoing mammography and 498 patients visiting their obstetrician-gynecologist were asked whether they would take a breast cancer 1 (BRCA1) test to detect a genetic susceptibility to breast cancer. More than 90% in both groups said they would take the test. Women were more likely to accept if they were regularly having breast examinations by a physician, believed that mammography effectively detects early breast cancer, and believed that early breast cancer is curable. If shown to have inherited a susceptibility, many reported that they would be very anxious, would want the test repeated, would examine their breasts more often than monthly, and would want mammography more often than yearly. Many also reported that they would recommend testing to relatives.

https://ajph.aphapublications.org/doi/pdfplus/10.2105/AJPH.85.8_Pt_1.1133

Women's receptivity to testing for a genetic susceptibility to breast cancer.

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Women's receptivity to testing for a genetic susceptibility to breast cancer.