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Genetic Professionals Weigh in on Genetic Testing Informed Consent Education

In a paper appearing in the European Journal of Human Genetics, investigators at Geisinger, Stanford University, the University of Colorado Anschutz Medical Campus, and elsewhere consider genetic counselor and medical geneticist perspectives on the educational aspects of informed consent in genetic testing. For the study, the team presented genetics professionals with several clinical scenarios in an anonymous online survey setting, asking the experts whether scenarios met the minimum, core educational concepts for informed consent and letting them weigh in with their own recommendations on missing or extraneous information. Based on survey responses from 238 participants, the authors found at least 65 percent agreement that sufficient information was provided in nearly all the scenarios. The exception was a scenario involving exome testing, where the respondents reached 58 percent agreement on the information presented. "As expert opinions can differ from that of the general population of practicing providers, the current study aimed to assess to what degree US-based clinical genetics providers (genetic counselors (GC) and medical geneticists) agreed with the previously developed list of minimum critical educational components of informed consent," the investigators explain, noting that study respondents "generally supported the expert consensus list developed in our prior work, suggesting that it is a reasonable starting point when outlining the educational concepts to be included in a targeted discussion for pre-test informed consent."

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