Hereditary breast and ovarian cancer and Lynch syndrome are the two most common hereditary cancer syndromes. They have an estimated combined prevalence of about 1 in 200 individuals. Current approaches to identify individuals who should be referred for genetic counseling and testing rely on knowledge of a family history of cancer, including cancer type and age of onset in first- and second-degree relatives. Thus, lack of knowledge of family cancer history may prevent appropriate assessment for hereditary cancer risk. This could lead to a missed opportunity to implement life-saving clinical interventions, such as risk-reducing surgery, and allow for at-risk biological family members to receive information on familial cancer risk. Thus, open family communication about health history and genetic risk are a significant factor in guiding appropriate referrals for genetic counseling and testing to diagnose individuals at increased genetic cancer risk. Sexual minority individuals, however, may have limited knowledge and access to cancer histories among family members due to increased rates of stigma and intolerance that may lead to strained or estranged family relationships. The proposed study will explore knowledge, experiences, and barriers and facilitators to family cancer information among sexual minorities that may lead to health disparities in the context of assessment and communication of hereditary cancer risk. This study aligns with the specific aims of the parent grant, the Cancer Health Assessments Reaching Many (CHARM) study, which aims to increase access to genetic testing for hereditary cancer syndromes across diverse populations that may experience health disparities. We will recruit 20 CHARM participants to perform in-depth, semi- quantitative interviews to explore domains associated with family communication and cancer risk assessments. This work will provide an important foundation to understanding barriers in the context familial cancer risk and guide how to tailor access to genetic cancer risk information to better address the needs of sexual minority individuals.

Public Health Relevance

People who have a sexual orientation other than heterosexual (e.g., gay, lesbian, bisexual) may not know how many people in their family have a diagnosis of cancer due to strained family relationships. This study aims to understand how this may limit access to genetic counseling and testing for increased cancer risk.

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Research Project--Cooperative Agreements (U01)
Project #
3U01HG007292-07S3
Application #
9930299
Study Section
Special Emphasis Panel (ZHG1)
Program Officer
Hindorff, Lucia
Project Start
2013-06-14
Project End
2021-05-31
Budget Start
2019-09-20
Budget End
2020-05-31
Support Year
7
Fiscal Year
2019
Total Cost
Indirect Cost
Name
Kaiser Foundation Research Institute
Department
Type
DUNS #
150829349
City
Oakland
State
CA
Country
United States
Zip Code
94612
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