A Model Protocol for Evaluating the Behavioral and Psychosocial Effects of BRCA1 Testing

Botkin, Jeffrey R.; Croyle, Robert T.; Smith, Ken R.; Baty, Bonnie J.; Lerman, Caryn; Goldgar, David E.; Ward, Jacob; Flick, Bonnie J.; Nash, Jean E.

doi:10.1093/jnci/88.13.872

Cited by 96 publications

(67 citation statements)

References 40 publications

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“…Enrollment (response) rates in our study were comparable to prior BRCA testing kindred studies of predominantly non-Latino whites [Botkin et al, 1996;Lerman et al, 1996] and population-based samples of African Americans. Our response rate was also comparable to other BRCA testing studies of a community-based study population [Thompson et al, 2003] and a self-referred genetic education and testing research program [Hughes et al, 2003]; both prior studies focused on African-American women.…”

Section: Discussionsupporting

confidence: 71%

Acceptance of genetic testing for hereditary breast ovarian cancer among study enrollees from an African American kindred

et al. 2006

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Clinical availability of genetic testing for cancer predisposition genes is generating a major challenge for U.S. health care systems to provide relevant genetic services to underserved populations. Here we present rates of study enrollment and utilization of genetic testing in a research study on BRCA1 testing acceptance in one large kindred. We also present data on baseline access to genetic information as well as enabling and obstructing factors to study enrollment. The study population included female and male members of an African-American kindred based in the rural southern United States with an identified BRCA1 mutation. A combination of quantitative and qualitative data were collected and analyzed. Of the 160 living, eligible and locatable kindred members, 105 (66%) enrolled in the study. Family, personal, and educational motivations were the most commonly endorsed reasons for study participation. The most commonly cited reasons for refusal to participate in the study were: lack of interest, time constraints, and negative experiences with prior participation in genetic research. Eighty three percent of the participants underwent BRCA1 testing. In multiple logistic regression analysis, age 40-49 (odds ratio (OR) = 6.9; 95% confidence interval (CI) = 1.2-39.5), increased perceived cancer risk (OR = 4.1; 95% CI = 1.1-14.6), and high cancer genetics knowledge levels (OR = 1.5; 95% CI = 1.1-2.3) were associated with BRCA1 testing acceptance. The results of this study indicate that cognitive and demographic factors may influence genetic research participation and genetic testing decisions among African Americans who are at increased risk of carrying a deleterious BRCA1 mutation.

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Section: Discussionsupporting

confidence: 71%

Acceptance of genetic testing for hereditary breast ovarian cancer among study enrollees from an African American kindred

et al. 2006

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“…For 5 years, predictive testing has increasingly been offered to persons with a family history of breast/ovarian cancer. Given the complexity and uncertainties of HBOC and the potential impact of test results on anxiety, depression levels and selfesteem, it has been recommended [15][16][17][18][19][20] that predictive testing should be undertaken by a multidisciplinary team. Test participants need fully to understand what the results of the predictive test may mean for them before the test is performed.…”

Section: Introductionmentioning

confidence: 99%

Predictive testing for hereditary breast and ovarian cancer: a psychological framework for pre-test counselling

et al. 2000

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Since the identification of two breast-ovarian cancer susceptibility genes (BRCA1/2), predictive testing for hereditary breast/ovarian cancer (HBOC) has been available. Given the complexity and uncertainties of HBOC and the potential impact of predictive testing on psychological well-being, we offer the test applicants a combination of information-oriented and psychological counselling. In this paper, we describe the multidisciplinary approach for predictive testing for HBOC as a clinical service in Leuven, hereby focusing on psychological and decision counselling practice. Attention is paid to the theoretical framework used for pre-test psychological counselling in Leuven. We discuss three important interacting dimensions of psychological counselling: individual emotional support, decision counselling and support of the family communication process. Decision counselling consists of an evaluation of the cognitive and the emotional processing of the information given and strategies and resources for coping. This serves as a starting point to facilitate free informed decision making. Scenario development is used as a decision aid. European Journal of Human Genetics (2000) 8, 130-136.

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“…Not all sequelae to risk notification may be negative, as disclosure of a noncarrier status can be a time of great relief (28). However, researchers in this field agree the amount of evidence to date does not provide a clear understanding of the psychological impact of one's mutation carrier status (14,19,29). At present, possible emotional sequelae to the susceptibiliry risk notification process remain largely speculative.…”

Section: Potential Psychological Reactions To Genetic Resultsmentioning

confidence: 99%

“…There remain many unresolved questions regarding a range of psychosocial issues (19). Confidentiality becomes a matter of utmost importance, as uncertainty exists over how to shield this genetic testing information and from whom.…”

Section: Aspects Of Genetic Screeningmentioning

confidence: 99%

Psychological and Behavioral Implications of Screening for Breast or Ovarian Cancer Predisposition Genes BRCA1 and BRCA2

Lesniak

Callaway

Althaus

et al. 1999

Baylor University Medical Center Proceedings

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A Model Protocol for Evaluating the Behavioral and Psychosocial Effects of BRCA1 Testing

Cited by 96 publications

References 40 publications

Acceptance of genetic testing for hereditary breast ovarian cancer among study enrollees from an African American kindred

Acceptance of genetic testing for hereditary breast ovarian cancer among study enrollees from an African American kindred

Predictive testing for hereditary breast and ovarian cancer: a psychological framework for pre-test counselling

Psychological and Behavioral Implications of Screening for Breast or Ovarian Cancer Predisposition Genes BRCA1 and BRCA2

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