Bioethics Blogs

Bioethics Deliberation and Education in Safeguarding Children

In the most recent post for the “Deliberation and Education” series, we examined the role of deliberation in the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) fourth report Privacy and Progress in Whole Genome Sequencing. While not specifically citing democratic deliberation in its recommendations in Privacy and Progress, the Bioethics Commission actively demonstrated the principle by inviting experts from the public and private sectors to inform their public deliberations on the topic. The fifth post in the series will examine deliberation and education in the Commission’s fifth report: Safeguarding Children: Pediatric Medical Countermeasure Research.

At the request of the Secretary for Health and Human Services, the Bioethics Commission conducted a careful and transparent review of the ethical considerations of conducting medical countermeasure (MCM) research with children.

Safeguarding Children, published in March 2013, is the Bioethics Commission’s response to this request. In this report, the Commission made six recommendations concerning MCM research with children, differentiating between pre-event (before exposure to an agent) and post-event (after exposure) research. The Commission identified four ethical principles to guide their discussion of pediatric research protections: respect for persons, beneficence, justice, and democratic deliberation. The Commission recognized that in research, one example of democratic deliberation is community engagement—the process of including community members in an ongoing public exchange of ideas. Democratic deliberation can also be present in various aspects of institutional research review and approval. The Commission referenced community engagement and democratic deliberation in its recommendations for both pre- and post-event research.

In its fourth recommendation, the Bioethics Commission included community engagement in its recommended ethical framework for national-level review of pre-event research that poses more than minimal risk without a prospect of direct benefit.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.