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 four ongoing studies that fall within these aims. 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. During this past year, we have also partnered with the INSIGHTS study team to develop a project under the Umbrella Protocol that examines the social contextual factors that surround families affected by Sickle Cell Disease. We have successfully recruited 181 participants from 79 families; 166 completed both the survey and interview, 3 completed interview only, and 12 completed survey only. This project is currently closed to recruitment, and several manuscripts describing results are in progress. 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 three manuscripts from this project that have been published. 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 description of our evaluation of the workbook within an African American sample is currently in review. In response to this evaluation, we are currently developing a community education program that will be pilot tested in collaboration with Georgetown's Office of Minority Health and Health Disparities Research during the Fall, 2018. The Families SHARE workbook was also 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. A paper describing the family network systems at baseline is under review. We continue to work with our Australian collaborators on a digital version of the tool that will broaden our ability to reach at-risk families. 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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13
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2018
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Human Genome Research
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Skapinsky, Kaley F; Persky, Susan; Lewis, Megan et al. (2018) Heart disease risk information, encouragement, and physical activity among Mexican-origin couples: Self- or spouse-driven change? Transl Behav Med 8:95-104
Koehly, Laura M; Persky, Susan; Spotts, Erica et al. (2018) Social and behavioral science priorities for genomic translation. Transl Behav Med 8:137-143
Lin, Jielu; Marcum, Christopher S; Myers, Melanie F et al. (2018) Racial differences in family health history knowledge of type 2 diabetes: exploring the role of interpersonal mechanisms. Transl Behav Med 8:540-549
Song, Sunmi; Marcum, Christopher Steven; Wilkinson, Anna V et al. (2018) Genetic, Psychological, and Personal Network Factors Associated With Changes in Binge Drinking Over 2 Years Among Mexican Heritage Adolescents in the USA. Ann Behav Med :
Lin, Jielu; Marcum, Christopher S; Wilkinson, Anna V et al. (2018) Developing Shared Appraisals of Diabetes Risk Through Family Health History Feedback: The Case of Mexican-Heritage Families. Ann Behav Med 52:262-271
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
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. (2017) Let's Move Together. Health Educ Behav 44:141-152
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
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

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