Risk Reduction and Health Promotion Behaviors Following Genetic Testing for Adult-Onset Disorders

Abstract

Although clinical genetic testing is available for over 1,000 inherited disorders, consequences of predictive genetic testing have been most extensively examined for hereditary breast and ovarian cancer (HBOC), hereditary colon cancer, and Huntington disease (HD). These focus primarily on psychological, ethical, legal, and social aspects of genetic testing. Genetic testing may also provide information that can lead to behaviors that promote health and reduce risk for disease, reflecting options available for the disorder for which the person is at risk. However, regardless of condition, people completing a genetic test may inform relatives about the results of the test and implications for their risk to develop the condition. Literature on risk reduction behaviors and communication focuses on families with HBOC or colorectal cancer. Few reports document behaviors for other conditions. This paper presents a systematic review of the research literature on risk reduction and health promotion behaviors following clinical genetic testing for adult onset conditions, primarily HBOC, familial colon cancers, and HD. Insights gleaned from this review are discussed as a basis for planning monitoring of health promotion and risk-reduction behaviors for genetic testing for present and future use.

Family health information sharing among older adults: reaching more family members

“…However, older adults may be less likely to share FHH with family members due to the lower levels of health literacy and knowledge about genetics among them compared to younger individuals (Ashida et al 2010). Although some also worry about alarming family members with threatening health information especially regarding highly penetrant conditions like Huntington's disease and hereditary cancer syndromes (Beery and Williams 2007;van Oostrom et al 2007b), communicating FHH about more commonly occurring complex diseases like heart disease and nonhereditary cancer is likely to be less threatening (Rolland and Williams 2005). Because facilitating FHH communication between older adults and their family members, especially about common complex diseases, can have positive implications on the health of all family members, it is critical that we identify the factors to help facilitate FHH sharing among older adults.…”

Male breast cancer: Risk factors, diagnosis, and management (Review)

“…The individual receiving genetic test results has the onus of delivering cancer risk information to the rest of the family (17). In some families with a cancer history, male members are less likely to be informed of test results received by female relatives (58)(59)(60), and are less likely to be included in family conversations about familial cancer risk (61,62). Counseling by a genetics professional is recommended to help families communicate and understand individual risk (17).…”

The psychological impact of genetic information on children: a systematic review

“…1,2 With the growth in genetics-related technologies following the success of the Human Genome Project, 3 interest in the psychological implications of these technologies has increased. [4][5][6] Research has highlighted both positive and negative implications for those who undergo genetic testing.…”