Ethical Considerations Regarding Classroom Use of Personal Genomic Information

Abstract

Rapidly decreasing costs of genetic technologies—especially next-generation sequencing—and intensifying need for a clinical workforce trained in genomic medicine have increased interest in having students use personal genomic information to motivate and enhance genomics education. Numerous ethical issues attend classroom/pedagogical use of students’ personal genomic information, including their informed decision to participate, pressures to participate, privacy concerns, and psychosocial sequelae of learning genomic information. This paper addresses these issues, advocates explicit discussion of these issues to cultivate students’ ethical reasoning skills, suggests ways to mitigate potential harms, and recommends collection of ethically relevant data regarding pedagogical use of personal genomic information.

Effects of Using Personal Genotype Data on Student Learning and Attitudes in a Pharmacogenomics Course

“…To ensure a clear delineation between educational and human subject research, we did not retain, report, or use student genotype data in any form, although students could opt to share their data anonymously into dbGaP before it was destroyed by the laboratory. These measures are consistent with those previously used or recommended by ethicists 11,12,16,28,29 and were associated with no or minimal student anxiety in the decision to undergo genotyping and student confidence that course instructors were unaware of their choice. However, scalability of these protective measures will be an important consideration for future educational efforts in this area.…”

“…Study findings also contribute to the growing body of evidence that thoughtful genotyping processes can help overcome potential ethical questions with student personal genotype evaluation, including concerns about student vulnerability, exploitation, or coercion, the possibility of returning test results with unclear or shifting clinical implications for disease risk, and a blurred line between educational and human subject research. 14,15,28,29 We employed measures to protect students that included the use of an honest broker intermediary for all study-related communication, faculty blinding to student genotyping choice, coverage of bioethics and informed consent for genetic testing prior to genotyping offer, offer of genetic counseling at no charge, and use of specific verbiage during question-and-answer sessions to avoid revealing students' genotyping choice. Although there is minimal risk of incidental findings or disease associations with the pharmacogenetic SNP data, we also conducted searches of the database of Genotypes and Phenotypes (dbGaP), and the National Human Genome Research Institute Genome-Wide Association Study (NHGRI GWAS) Catalog on all SNPs prior to the start of the course and again before returning any student genotyping data to identify and remove any SNPs that could be associated with disease risk.…”

Advancing Pharmacogenomics Education in the Core PharmD Curriculum through Student Personal Genomic Testing

“…15 The risks to implementing PGT in an educational setting involve privacy and confidentiality, coercion vs a right to know (or not know), maintaining equal learning opportunities, psychosocial issues, and incidental findings. 12,19 We believe that the Test2Learn implementation model created a clear path forward to mitigate these risks. Problems associated with privacy, confidentiality, and coercion in a classroom setting were mitigated through the use of blinding, USB drives, the Personal Genome Browser Tool, careful design so students understood the activity was optional, and ensuring that no identifiable data was collected.…”

“…All students attended a mandatory ethics presentation delivered by a qualified bioethicist that discussed the risks of genetic testing. 19 These lectures, supplemented by optional time set aside for faculty consultation, allowed students to make an informed decision over a 4-week time period regarding whether or not to undergo PGT. A genetic counselor was also made available as an additional safety net.…”

Anticipation of Personal Genomics Data Enhances Interest and Learning Environment in Genomics and Molecular Biology Undergraduate Courses

“…No one besides the student had access to his or her personal genomic data. While integrating analysis of personal genomics data as a part of the course could be a valuable way to enhance learning, it also produces additional classroom privacy issues that would need to be addressed [ 25 ]. Importantly in this study, we found that the mere anticipation of getting your personal genomics data after the course is over plays an important role in improving student interest and learning in undergraduate molecular biology and genomics classes at Brigham Young University.…”