Last week, we continued our “Deliberation and Education” series with the blog post “Bioethics Deliberation and Education in Moral Science.” Each post in this series explores the role of deliberation and education in the recommendations issued by the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission). This fourth post in the series will examine deliberation and education in the Bioethics Commission’s fourth report: Privacy and Progress in Whole Genome Sequencing.
Privacy and Progress, released in October 2012, is the Bioethics Commission’s first self-directed project. Recognizing that the increased use of genetic testing in research and the clinic could yield both major advances in healthcare as well as ethical dilemmas, the Commission sought to study the pressing privacy and data access issues raised by the emergence of low cost whole genome sequencing. In Privacy and Progress, the Commission sought to outline many of the key issues surrounding how to reconcile an individual’s need for privacy, consent, and respect with the need for gathering data from many individuals to advance scientific discoveries for the common good.
The Bioethics Commission made 12 recommendations centered around several themes: strong baseline protections while promoting data access and sharing; data security and access to databases; informed consent; facilitating progress in whole genome sequencing; and public benefit. While none of the recommendations specifically included democratic deliberation or education, democratic deliberation was specifically cited as one of the principles the Commission included in their ethical framework for considering the implications of scientific advances. The guiding principles included: public beneficence, responsible stewardship, intellectual freedom and responsibility, democratic deliberation, and justice and fairness. First described in detail in New Directions: The Ethics of Synthetic Biology and Emerging Technologies, the Commission applied these principles, along with the principle of respect for persons, to their examination of the science of whole genome sequencing. This ethical framework directed their analysis towards a focus on pursuing public benefit while minimizing both personal and public risk.
For Privacy and Progress, the Bioethics Commission focused its ethical analysis on issues of privacy associated with whole genome sequencing data. While not specifically citing democratic deliberation in its recommendations, the Commission actively demonstrated the principle by inviting experts from the public and private sectors to inform their public deliberations on the topic, a process it has engaged in since its establishment.
Privacy and Progress and all other Bioethics Commission reports are available at bioethics.gov.