Conclusion:Giving students the option of analyzing their own genomes may increase motivation to learn, but some students may experience personal WGS results-related distress and regret. Additional evidence is required before considering incorporating optional personal genome analysis into medical education on a large scale.
Genet Med advance online publication 29 January 2015Key Words: genetic education; medical education; personal genomes; whole-genome sequencing
867Personal genome analysis in medical education | SANDERSON et al
Original research articlewith the individual's values. 18,19 Courses that provide students the option of analyzing their own genomes must help them make thoughtful and careful decisions about whether personal genome analysis is right for them as individuals. 10,20 We therefore designed a required 26-h introductory course, an advanced personal genomics course, and an accompanying sequencing protocol in which students could choose to analyze their own or an anonymous personal genome. As previously reported, we observed increases in informed decision making among this student cohort, as measured by decreased decisional conflict after the introductory course. 20 The objectives of this report are to explore the educational and psychological outcomes of the students who had the option of analyzing their own WGS data as part of their advanced genomics training.
MATeRIALs AND MeTHODsThis was a longitudinal cohort study that took place at the Icahn School of Medicine at Mount Sinai (ISMMS) in New York between September 2012 and September 2013. The protocols for both the sequencing component and the social science research component of the course were submitted to the ISMMS institutional review board. The board determined that the primary aim of the research was to assess the students' decision making and outcomes regarding analyzing their own genomes in an educational setting and that the research (questionnaires, interviews) addressing these aims posed no greater than minimal risk and met criteria for exemption under category 2 research involving the use of educational tests or survey procedures.The institutional review board also determined that the sequencing was part of the educational experience and referred the course directors to the ISMMS Research Ethics Committee regarding this component of the proposed course. The research ethics committee reviewed the sequencing component, particularly focusing on confidentiality and coercion; the committee determined that their concerns regarding these ethical issues were addressed by the course design and so approved the sequencing as part of the course. The course also was reviewed and approved by the dean of the ISMMS and by the CePORTED Curriculum Committee. The course directors also consulted the medical center's general counsel and the New York State Department of Health while designing the course.Participants were 19 students (10 male, 9 female) enrolled in an advanced genomics course. Five were genetic counseling masters students, three medi...