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 Syndrome (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. We successfully recruited 497 participants for baseline assessments (162 households), 481 participants completed the 1-month follow-up assessment and 461 participants had completed the 6-month follow-up assessment. Manuscript preparation for this project is currently underway. 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.

Project Start
Project End
Budget Start
Budget End
Support Year
6
Fiscal Year
2011
Total Cost
$972,437
Indirect Cost
Name
National Human Genome Research Institute
Department
Type
DUNS #
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Hooker, Gillian W; Umstead, Kendall L; Lewis, Katie L et al. (2017) Engagement and communication among participants in the ClinSeq Genomic Sequencing Study. Genet Med 19:98-103
Lin, Jielu; Marcum, Christopher S; Myers, Melanie F et al. (2017) Put the Family Back in Family Health History: A Multiple-Informant Approach. Am J Prev Med 52:640-644
Wilkinson, Anna V; Miller, Erline E; Koehly, Laura M et al. (2017) Correlates of Physical Activity Differ by Sex and Country of Birth Among Mexican-Heritage Youth. J Immigr Minor Health 19:246-253
de Heer, Hendrik Dirk; de la Haye, Kayla; Skapinsky, Kaley et al. (2016) Let's Move Together: A Randomized Trial of the Impact of Family Health History on Encouragement and Co-Engagement in Physical Activity of Mexican-Origin Parents and Their Children. Health Educ Behav :
Wilson, Carlene J; de la Haye, Kayla; Coveney, John et al. (2016) Protocol for a randomized controlled trial testing the impact of feedback on familial risk of chronic diseases on family-level intentions to participate in preventive lifestyle behaviors. BMC Public Health 16:965
Goergen, Andrea F; Ashida, Sato; Skapinsky, Kaley et al. (2016) What You Don't Know: Improving Family Health History Knowledge among Multigenerational Families of Mexican Origin. Public Health Genomics 19:93-101
Koehly, Laura M; Morris, Bronwyn A; Skapinsky, Kaley et al. (2015) Evaluation of the Families SHARE workbook: an educational tool outlining disease risk and healthy guidelines to reduce risk of heart disease, diabetes, breast cancer and colorectal cancer. BMC Public Health 15:1120
Marcum, Christopher Steven; Koehly, Laura M (2015) Inter-generational contact from a network perspective. Adv Life Course Res 24:10-20
Bigman, Galya; Rajesh, Vandita; Koehly, Laura M et al. (2015) Family Cohesion and Moderate-to-Vigorous Physical Activity Among Mexican Origin Adolescents: A Longitudinal Perspective. J Phys Act Health 12:1023-30
Myers, Melanie F; Fernandes, Sara L; Arduser, Lora et al. (2015) Talking About Type 2 Diabetes: Family Communication From the Perspective of At-Risk Relatives. Diabetes Educ 41:716-28

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