Evolution of the Colored Eco-Genetic Relationship Map (CEGRM) for Assessing Social Functioning in Women in Hereditary Breast-Ovarian (HBOC) Families |
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Authors: | June A. Peters Lindsey Hoskins Sheila Prindiville Regina Kenen Mark H. Greene |
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Affiliation: | (1) Clinical Genetics Branch (CGB), Division of Cancer Epidemiology and Genetics (DCEG), National Cancer Institute (NCI), National Institutes of Health (NIH), Department of Health and Human Services (DHHS), 6120 Executive Blvd, #EPS 7026, Rockville, MD, USA;(2) University of Maryland, College Park, MD, USA;(3) Genetics Branch, Center for Cancer Research, NCI, NIH, Bethesda, MD, USA;(4) University of Pennsylvania, Philadelphia, PA, USA |
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Abstract: | The CEGRM was initially conceived as a simple, concise, visual representation of the social interaction domains of information, tangible services and emotional exchanges (Kenen, R., & Peters, J. (2001). J Genet Counsel, 10, 289–309). A blend of the genetic pedigree, genogram, and ecomap, the CEGRM was developed to facilitate contemporary genetic counseling goals. An exploratory pilot study of 20 subjects showed that it was feasible, comfortable and efficiently accomplished, and that the process was useful both for assessment and as an intervention with study participants (Peters, J. A., Kenen, R., Giusti, R., Loud, J., Weissman, N., & Greene, M. H. (2004). Am J Med Genet Part A, 130A, 258–264). Subsequently, we have extended the CEGRM to 150 women from hereditary breast/ovarian cancer (HBOC) families; three different investigators have successfully administered this tool. The preliminary findings from the exploratory study were confirmed in the larger sample. Engaging in the interactive, insight-promoting CEGRM process provides a novel tool for assessing the social context of genetic testing, and helping high-risk women better understand and integrate genetic information into their personal and family identities, health beliefs, and decisions. |
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Keywords: | genetic counseling breast cancer genetics genetic testing family friends relationships kin social network communications pedigree genogram ecomap psychosocial psychological social familial cancer hereditary cancer |
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