The blog of the 2009 – 2017 Presidential Commission for the Study of Bioethical Issues

Using the Bioethics Commission’s Pedagogical Materials on Informed Consent and Incidental Findings to Engage Students Undergoing Personalized Genetic Testing

Recently, some U.S. educational institutions have used personalized genetic testing (PGT) as a pedagogical tool for teaching human genetics, allowing students to generate real-world experiences with technology relevant to course content. In a recent article published in the Journal of Microbiology & Biology Education, Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) staff members Tenny Zhang and Misti Ault Anderson assert that PGT also can be an effective tool for incorporating ethics into the biology classroom. Experiencing PGT first-hand represents a chance for students to reflect upon and discuss the many facets of genetic testing, including the interpretation, limitations, and potential impacts on individuals and society.

PGT in the educational setting provides an opportunity to integrate ethical considerations into the science classroom since genetic testing can raise a number of ethical concerns, including ensuring informed consent, protecting privacy, and promoting accessibility, among others. Integrating discussion about ethics into biology courses that offer PGT can help students to make direct and personal connections between the science learned in class and related bioethical challenges, and encourage consideration of the broader ethical implications of genetic testing.

While it has not taken a position on the use of PGT in the classroom itself, the Bioethics Commission has consistently emphasized in its work the need for ethics education across various disciplines, educational levels, and settings. As part of its ongoing effort to support bioethics education, the Bioethics Commission developed educational materials to facilitate ethics integration.

The Bioethics Commission’s topic-based modules, which are designed to be flexible to support multiple approaches to implementation and can be adapted into existing curricula in various educational settings, can provide a helpful resource to instructors using PGT in classrooms. Report-specific modules about informed consent in the context of whole genome sequencing (Informed Consent in Privacy and Progress) and incidental findings (Informed Consent in Anticipate and Communicate) are relevant to PGT and might help encourage students to consider the ethical complexities of genetic testing. The Conversation Series primer on incidental findings for consumers helps them to understand what incidental findings might arise in the direct-to-consumer (DTC) context and prepares them to ask the DTC provider relevant and important questions.

The full article by Zhang and Anderson, “Personalized Genetic Testing as a Tool for Integrating Ethics Instruction into Biology Courses,” can be read here.

For more information on all of the Bioethics Commission’s educational efforts, please watch the video, Promoting and Providing Materials for Bioethics Education, here.

All Bioethics Commission pedagogical materials are publicly accessible at www.bioethics.gov.

The Bioethics Commission encourages feedback on its materials at education@bioethics.gov.

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About blog.Bioethics.gov

This is a space for the members and staff of the 2009 -2017 Presidential Commission for the Study of Bioethical Issues to communicate with the public about the work of the commission and to discuss important issues in bioethics.

As of January 15th, 2017 this blog will no longer be updated but continues to be available as an archive of the work of the 2009-2017 Presidential Commission for the Study of Bioethical Issues

Learn more about the 2009 - 2017 Presidential Commission for the Study of Bioethical Issues.