Relatives and Risk-Reporting: An Updated Assessment of Genetic Counselors’ Perspectives
Capstone Project Committee: Nancy Callanan, MS, CGC, Bonnie LeRoy, MS, CGC, Terrance McConnell, PhD, Scott Richter, PhD (Statistical Consultant)
Background: Genetic counselors are faced with an ethical dilemma when clients are unwilling to share pertinent genetic risk information with at-risk family members. On one hand, genetic counselors strive to protect patient privacy and autonomy; on the other hand, they endeavor to promote the well-being of those identified to be at risk for a genetic condition. While the concept of duty to warn has been discussed at length and over several decades, very few discussions have focused specifically on the clinical experiences and opinions of genetic counselors. Goals: The goals of this research study were to attempt to understand (1) What are the experiences of genetic counselors with duty to warn today?; (2) If genetic counselors themselves have access to familial contact information, what do they do?; and (3) How do genetic counselors motivate clients to share important genetic information with family members? We hypothesized that genetic counselors continue to struggle with the duty to warn and that, through clinical experience, genetic counselors are able to offer strategies for addressing this ongoing challenge. Methods: An online anonymous survey was distributed through the NSGC Eblast to recruit participants. In addition, semi-structured telephone interviews were utilized to gain the perspectives of practicing genetic counselors. Four hypothetical clinical scenarios were provided to gauge participants’ opinions regarding genetic counselor duty to warn and elicit strategies for addressing this issue. Results: In total, 92 participants completed the survey in its entirety and two genetic counselors completed follow-up interviews. Over 50% of survey participants reported that they had experience with client unwillingness to share genetic risk information with relatives. For three out of four hypothetical scenarios, participants reported that genetic counselors had responsibility to some degree or to a great extent to inform the client’s at-risk family members. Many participants reported that they would approach duty to warn situations by consulting with an ethics/legal committee, utilizing active counseling skills, and/or facilitating information-sharing through the use of tools such as a family letter or information packet, support group, or other supportive or educational resource. Whether or not participants would/would not consider informing relatives without client’s permission depended on the particular clinical case. Conclusions: Duty to warn continues to be a relevant issue in today’s genetic counseling profession. Genetic counselors report various methods for motivating clients to share genetic risks with relatives. Further studies are required to continue to explore genetic counselors perspectives on duty to warn and to further develop professional guidelines addressing this issue.
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