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. We currently have six ongoing studies that fall within these aims. With respect to highly penetrant genetic disorders, 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 were obtained at baseline and at three annual follow-ups. We have completed coding the annual follow-up CEGRMs for future analyses. We continue to consider how families communicate about, experience, and cope with inherited conditions. We have established an Umbrella Protocol that allows us to examine these processes in ongoing studies (NHGRI Protocol #12-HG-N149; PI: Laura Koehly). One such project examines these relational processes within families affected by and at risk of Type 2 Diabetes. This research is conducted in collaboration with Dr. Melanie Myers of Cincinnati Children's Hospital Medical Center. We have successfully recruited and completed 155 assessments since beginning this effort. During the reporting period, we have one manuscript that has been published and another paper under review. During this past year, we have also partnered with the INSIGHTS study team to develop a project under this protocol that examines the social contextual factors that surround families affected by Sickle Cell Disease. We have successfully consented 184 participants from 81 families; 128 have completed both the survey and interview, with the remaining 36 currently in the process of completing assessments. In 2010 we completed recruitment and assessment on Project RAMA. In this study, 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 CDC's Family Healthware to provide risk information based on participants family health history and behavioral recommendations based on participants current health behaviors. We used Family Healthware to provide risk feedback to participants from Mexican American households in the Houston, TX area. We successfully recruited 497 participants for baseline assessments (162 households), 481 participants completed the 3-month follow-up assessment and 461 participants completed the 10-month follow-up assessment. Recent efforts have focused on analyzing these data to identify how family history based risk feedback motivates family communications about common, complex diseases and the development of cooperative strategies, such as encouragement to screen, to address this risk. Within the current reporting period, we have one manuscript from this project in press and one paper currently under review. Based on results from Project RAMA, we have begun to develop a family health history assessment tool called Families SHARE (Sharing Health Assessments and Risk Evaluation). It is anticipated that this tool will be used by a family genomics health educator to disseminate family risk information to their first and second degree relatives and encourage risk reducing behaviors. Based on our evaluation of the tool, which included individual interviews with 85 participants and three focus groups, we have finalized the workbook contents (NHGRI Protocol #12-HG-N023; PI: Laura Koehly). A manuscript describing this process has recently been published. The workbook is currently being used in a family-based family health history initiative funded by the Australian Research Council and co-sponsored by the Cancer Council of South Australia; data collection on this project was completed in 2014. A paper describing this effort has been published and a baseline paper describing the family network systems is under review. Our research has provided evidence that families are a social context for which social network based interventions may be particularly effective in motivating the dissemination of genomic risk information and engaging families in cooperative approaches to facilitate positive adaptation to disease risk. However, not much is known about other social spheres in which health information is exchanged that may be leveraged in network-based interventions. To this end, we have developed an assessment tool to be used for large scale collection of social network information from participants that will identify social network typologies that might be used to tailor health promotion interventions. A description of these data was recently presented at the annual meeting of the International Network of Social Network Analysis; a manuscript based on this report is currently under review. In addition, we have partnered with collaborators at the University of Texas Health Sciences Center on Project MATCH in which we aim to understand the social, cultural, and genomic factors associated with health behaviors in adolescents of Mexican heritage. One paper examining the role of such factors in physical activity was published during the current reporting period.
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