How do students react to analyzing their own genomes in a whole-genome sequencing course?: outcomes of a longitudinal cohort study

Abstract

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...

Medical Student Preparedness for an Era of Personalized Medicine: Findings from One us Medical School

“…ISMMS is an early adopter of personalized medicine with several educational genomic initiatives [18, 29] and translational genomic medicine research programs in place [13]; this emphasis on genomics and personalized medicine may not be reflective of other medical schools in the USA or in other countries. Thus, the study would benefit from additional assessment of the survey instrument in other settings.…”

“…Personal genome testing has been implemented at some institutions, including ISMMS, as a mechanism to enhance genomics education. At ISMMS, personal whole-genome sequencing is incorporated into an advanced laboratory-style genome analysis course [18], in which students who analyzed their own genomes (including five MD or MD/PhD students) were found to have a significant increase in objectively assessed genomics knowledge [29]. Similarly, Stanford students who analyzed their own DTC genotyping data in a genomics and personalized medicine course had a significant increase in their objective knowledge of genetics and personal genome testing, while non-genotyped students did not show any improvement [28].…”

Educational innovations in clinical pharmacogenomics

“…Sinai, in which whole-genome sequencing analysis was provided as part of an advanced genomics course, suggest that offering students the option to analyze their own genome may motivate learning, but may also result in distress and regret. 9 Hence, to incorporate personal genotyping into the curriculum, yet obviate concerns from using a testing platform that includes diseasesusceptibility variants, use of a pharmacogenomic array may be a better approach.…”

Pushing the envelope in genomics education

“…Sanderson et al 1 present the results of a set of questionnaires administered to 19 students who participated in an advanced genomics course in which they were offered the chance to have their genomes sequenced at no charge. The point of the exercise was for them to analyze their own data, unless they preferred to work with anonymized data (which none did).…”

“…Sanderson et al 1 acknowledge this risk, and measuring distress was one of the goals of the surveys. They also note that the analysis was viewed as an educational experience, not a clinical one, and emphasized that results should not be used for clinical decision making.…”