The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has posted to Bioethics.gov a new series of educational modules on privacy. The materials on privacy increase the breadth of topics covered by the Bioethics Commission’s educational resources; previous topics include community engagement, compensation for research-related injury, informed consent, and vulnerable populations. The new series includes a background module and one module to accompany the Bioethics Commission report Privacy and Progress in Whole Genome Sequencing.
The “Privacy Background” module describes a brief history of privacy; provides definitions of privacy and related concepts; relates privacy to the Bioethics Commission’s guiding ethical principles; identifies how U.S. case law, U.S. statutory protection, and the European approach have contributed to legal notions of privacy; explains privacy concerns and protections for health information; and addresses challenges to the de-identification of health-related data.
The “Privacy in Privacy and Progress in Whole Genome Sequencing” module describes the technique of whole genome sequencing and presents the privacy concerns related to whole genome sequencing. It identifies the ethical principles involved in reconciling individuals’ privacy and scientific progress in whole genome sequencing and explains the legal and policy considerations associated with protecting the privacy of individuals who contribute whole genome sequencing data and information to support scientific research.
All of the educational modules produced by the Bioethics Commission are based on the contemporary ethical issues addressed by the Commission, and are designed to provide instructors with foundational information, ethical analysis, discussion questions, problem-based learning scenarios, exercises, and additional resources to support ethics education and the integration of bioethical analysis into coursework across disciplines.