Abstract
BackgroundDirect-to-consumer (DTC) personal genotyping services are beginning to be adopted by educational institutions as pedagogical tools for learning about human genetics. However, there is little known about student reactions to such testing. This study investigated student experiences and attitudes towards DTC personal genome testing.MethodsIndividual interviews were conducted with students who chose to undergo personal genotyping in the context of an elective genetics course. Ten medical and graduate students were interviewed before genotyping occurred, and at 2 weeks and 6 months after receiving their genotype results. Qualitative analysis of interview transcripts assessed the expectations and experiences of students who underwent personal genotyping, how they interpreted and applied their results; how the testing affected the quality of their learning during the course, and what were their perceived needs for support.ResultsStudents stated that personal genotyping enhanced their engagement with the course content. Although students expressed skepticism over the clinical utility of some test results, they expressed significant enthusiasm immediately after receiving their personal genetic analysis, and were particularly interested in results such as drug response and carrier testing. However, few reported making behavioral changes or following up on specific results through a healthcare provider. Students did not report utilizing genetic counseling, despite feeling strongly that the 'general public' would need these services. In follow-up interviews, students exhibited poor recall on details of the consent and biobanking agreements, but expressed little regret over their decision to undergo genotyping. Students reported mining their raw genetic data, and conveyed a need for further consultation support in their exploration of genetic variants.ConclusionsPersonal genotyping may improve students' self-reported motivation and engagement with course material. However, consultative support that is different from traditional genetic counseling will be necessary to support students. Before incorporating personal genotyping into coursework, institutions should lead multi-disciplinary discussion to anticipate issues and incorporate teaching mechanisms that engage the ethical, legal, and social implications of personal genotyping, including addressing those found in this study, to go beyond what is offered by commercial providers.
Highlights
Direct-to-consumer (DTC) personal genotyping services are beginning to be adopted by educational institutions as pedagogical tools for learning about human genetics
In an effort to augment the learning environment, course instructors proposed that students should have the option to use their own genotype data in classroom exercises. To review this new approach, a multi-disciplinary task force consisting of faculty members in genetics, genetic counseling, law, ethics, education, and clinical departments, convened to discuss the proposal and to explore the risks of incorporating DTC personal genetic testing into the elective medical school course [14,19]
We explored the perspectives of students who had undergone personal genotyping in a course context, by conducting a series of individual interviews with students enrolled in GENE 210 before and after genotyping
Summary
Direct-to-consumer (DTC) personal genotyping services are beginning to be adopted by educational institutions as pedagogical tools for learning about human genetics. In an effort to augment the learning environment, course instructors proposed that students should have the option to use their own genotype data in classroom exercises To review this new approach, a multi-disciplinary task force consisting of faculty members in genetics, genetic counseling, law, ethics, education, and clinical departments, convened to discuss the proposal and to explore the risks of incorporating DTC personal genetic testing into the elective medical school course [14,19]. Through this process, the university task force identified 8 potential ethical challenges and their possible solutions. These recommendations were implemented when the course was first offered during the summer quarter of 2010
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