What’s the Harm? Genetic Counselor Perceptions of Adverse Effects of Genetics Service Provision by Non-Genetics Professionals
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Anecdotal accounts suggest some patients have experienced negative outcomes as a result of receiving genetics services from non-genetics providers, but empirical evidence of these incidents and their outcomes is limited. This study examined genetic counselors’ perceptions of the occurrence of such incidents in the state of Minnesota. Twenty-five genetic counselors completed an on-line survey and 20 also participated in a semi-structured telephone interview. The interviewees recalled and described 37 specific incidents they perceived as having negative outcomes for patients and/or their families. Inductive and cross-case analysis revealed common themes including: adverse psychosocial effects, inadequate genetic counseling, genetic testing and screening errors, medical mismanagement, negative shifts in attitudes toward medical providers, and unnecessary use of health care resources. Commonly mentioned strategies for preventing/mitigating negative outcomes included: educational outreach and awareness programs for medical providers and the general public, standardized testing and screening processes, and implementing mechanisms for reporting and addressing adverse events. Additional findings, practice and policy implications, and research recommendations are discussed.
KeywordsGenetic counseling Genetic testing Genetic counselors Non-genetics providers Harm Error Structured interview Minnesota
This study was done in partial fulfillment of the requirements for the first author’s Master of Science degree from the University of Minnesota. We would like to express our sincere appreciation to the genetic counselors who completed the online survey and to those who also shared their time and expertise in the interviews. We thank Rebecca Anderson, JD, MS, CGC, for providing feedback during the piloting of the survey and interview and Keith Dunder, Esq. for offering background on legal issues and cases related to genetics services. Dr. Christina Palmer served as Action Editor on the manuscript review process and publication decision.
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