Objectives-Given the importance of the dissemination of accurate family history to assess disease risk, we characterized the gatherers, disseminators, and blockers of health information within families at high genetic risk of cancer.Methods-A total of 5466 personal network members of 183 female participants of the Breast Imaging Study from 124 families with known mutations in the BRCA1/2 genes (associated with high risk of breast, ovarian, and other types of cancer) were identified by using the Colored EcoGenetic Relationship Map (CEGRM). Hierarchical nonlinear models were fitted to characterize information gatherers, disseminators, and blockers.Results-Gatherers of information were more often female (P<.001), parents (P<.001), and emotional support providers (P<.001). Disseminators were more likely female first-and seconddegree relatives (both P<.001), family members in the older or same generation as the participant (P<.001), those with a cancer history (P<.001), and providers of emotional (P<.001) or tangible support (P<.001). Blockers tended to be spouses or partners (P<.001) and male, first-degree relatives (P<.001).Correspondence should be sent to Laura M. Koehly, PhD, Building 31, Room B1B37D, 31 Center Drive-MSC 2073, Bethesda, MD 20892 (koehlyl@mail.nih. gov) Contributors All authors were part of team discussions leading to developing the research questions and the design and execution of this study. L. M. Koehly developed the specific hypotheses, analysis plan, and codebook for data construction; completed the analysis; and led the writing of the article. J. A. Peters and R. Kenen originated and published the CEGRM concept as a research assessment tool. J. A. Peters subsequently translated the concept into a clinical research protocol and conducted the participant interviews. L. M. Hoskins conducted participant interviews and coded responses. A. L. Ersig and N. R. Kuhn aided in developing the codebook for data construction and coded interview responses. J. T. Loud contributed to the design of the parent study, recruited study participants, and performed medical assessment within the study protocol. M. H. Greene contributed to the design and funding of the parent study. All authors contributed to the writing of the article.The views expressed in this article are those of the authors and do not necessarily reflect the official policy or position of the Department of Health and Human Services or the US government.
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Author ManuscriptAm J Public Health. Author manuscript; available in PMC 2010 January 7. Conclusions-Our results provide insight into which family members may, within a familybased intervention, effectively gather family risk information, disseminate information, and encourage discussions regarding shared family risk.Acquiring accurate information regarding familial disease risk is a key component of a proactive approach to health care. This information is needed both to permit an accurate risk assessment and to develop appropriate, cost-effective prevention and risk-r...
