Relationship between genetic knowledge and familial communication of CRC risk and intent to communicate CRCP genetic information: insights from FamilyTalk eMERGE III

Author:

Makhnoon Sukh1ORCID,Bowen Deborah J2ORCID,Shirts Brian H3,Fullerton Stephanie M2,Meischke Hendrika W4,Larson Eric B5,Ralston James D6,Leppig Kathleen6,Crosslin David R7,Veenstra David8,Jarvik Gail P9

Affiliation:

1. Department of Behavioral Science, UT MD Anderson Cancer Center, Houston, TX, USA

2. Department of Bioethics and Humanities, University of Washington, Seattle, WA, USA

3. Department of Laboratory Medicine, University of Washington, Seattle, WA, USA

4. Department of Health Services, University of Washington, Seattle, WA, USA

5. Kaiser Permanente Washington Health Research Institute, Seattle, WA, USA

6. Genetic Services, Kaiser Permanente Washington Health Research Institute, Seattle, WA, USA

7. Department of Biomedical Informatics and Medical Education, University of Washington, Seattle, WA, USA

8. Department of Pharmacy, University of Washington, Seattle, WA, USA

9. Departments of Medicine (Medical Genetics) and Genome Sciences, University of Washington Medical Center, Seattle, WA, USA

Abstract

Abstract Successful translation of genetic information into patient-centered care and improved outcomes depends, at least in part, on patients’ genetic knowledge. Although genetic knowledge is believed to be an important facilitator of familial communication of genetic risk information, empirical evidence of this association is lacking. We examined whether genetic knowledge was related to frequency of current familial communication about colorectal cancer and polyp (CRCP) risk, and future intention to share CRCP-related genomic test results with family members in a clinical sample of patients. We recruited 189 patients eligible for clinical CRCP sequencing to the eMERGE III FamilyTalk randomized controlled trial and surveyed them about genetic knowledge and familial communication at baseline. Participants were primarily Caucasian, 47% male, average age of 68 years, mostly well educated, and with high-income levels. Genetic knowledge was positively associated with future-intended familial communication of genetic information (odds ratio = 1.11, 95% confidence interval: 1.02–1.23), but not associated with current communication of CRC risk (β = 0.01, p = .58). Greater current communication of CRC risk was associated with better family functioning (β = 0.04, p = 8.2e-5). Participants’ genetic knowledge in this study was minimally associated with their intended familial communication of genetic information. Although participants have good intentions of communication, family-level factors may hinder actual follow through of these intentions. Continued focus on improving proband’s genetic knowledge coupled with interventions to overcome family-level barriers to communication may be needed to improve familial communication rates.

Funder

National Human Genome Research Institute

Publisher

Oxford University Press (OUP)

Subject

Behavioral Neuroscience,Applied Psychology

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