Our current work aims to understand the social mechanisms underlying the dissemination of family risk information and cooperative adaptation to shared risk. We examine these processes across several different disease contexts, representing highly penetrant, genetic disorders as well as more common, complex diseases that have genetic bases. In-depth interviews with 80 family members from 13 families affected by Lynch Syndrom (NHGRI Protocol # 05-HG-N249;PI: Laura Koehly)have been coded and are being used to investigate the role of the familial social structure in communications about family history of cancer, genetic testing and counseling, disclosure of mutation status are associated with the construals of disease risk and screening behaviors. Additionally, we are investigating the dissemination of genetic risk information and adaptation to risk in women from families with known BRCA1/2 mutations(NCI Protocol # 01-C-0009;PI: Jennifer Loud). This research uses the Colored Eco-genetic Relationship Map (CEGRM) to assess the communication and social support networks of study participants. Currently, 200 participants have been recruited into the study. CEGRM assessments and psychosocial measurements are obtained at baseline and at three annual follow-ups. With regards to communications regarding cancer risk, those who gather family risk information tend to be women, parents, and family members who provide emotional support. Those who actively disseminate information tend to be female first- and second-degree relatives, affected family members, and providers of emotional support and tangible assistance. These individuals take it upon themselves to tell family members about the familial cancer history and genetic risk information, as well as encourage open communication among family members. Our analyses also suggest that cooperative support processes among sisters are both positively and negatively associated with well-being. Shared emotional support resources among sisters appears to facilitate positive adaptation, whereas large numbers of shared informational resources among sisters appears to be associated with increased somatization suggesting a contagion effect. Finally, we are investigating the dissemination process for complex disease risk information based on family health history and the development of family level strategies to address this risk (NHGRI Protocol # 07-HG-N140;PI: Laura Koehly). This research uses the CDCs Family Healthware to provide risk information based on participants family history and behavioral recommendations based on participants current health behaviors. We will use this software to provide feedback to participants from Mexican American households in the Houston, TX area and assess how this feedback motivates family communications about common, complex diseases and the development of cooperative strategies, such as encouragement to screen, to address this risk. At the time of this report, 497 participants had completed baseline assessments (162 households), 481 participants had completed the 1-month follow-up assessment, and 461 participants had completed the 6-month follow-up assessment. In a collaboration with the REVEAL team, we have also been examining patterns of disclosure regarding APOE genetic testing for Alzheimer's disease and how this disclosure process is related to coping with genetic risk information.
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