Last month, we left off our “Deliberation and Education” series with the blog post “Bioethics Deliberation and Education in Safeguarding Children.” Like previous posts in this series, it examined the role of deliberation and education in the recommendations issued by the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission). This fifth post in the series will examine deliberation and education in the Bioethics Commission’s sixth report: Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts.
Anticipate and Communicate, released in December 2013, expands upon the Bioethics Commission’s previous report, Privacy and Progress in Whole Genome Sequencing. Recognizing that the ethics of reporting incidental findings to individuals was an important and unsettled issue raised in Privacy and Progress, the Commission chose to examine both incidental and secondary findings further in a later report.
The Bioethics Commission made 17 recommendations, divided into overarching and context-specific recommendations for clinicians, researchers, and direct-to-consumer companies. In its fourth overarching recommendation, the Commission directly recommended education as a part of the ethical management of incidental and secondary findings:
Public and private entities should prepare educational materials to inform all stakeholders—including practitioners, institutional review boards, and potential recipients—about the ethical, practical, and legal considerations raised by incidental and secondary findings.
The Bioethics Commission recognized that education is important for ensuring both that the public is able to make informed decisions and that practitioners are aware of their ethical obligations with regard to incidental findings. With this in mind, the Commission created a series of primers for IRB members, practitioners, and recipients to support the practical application of its recommendations. These primers are only the beginning; there still remain numerous opportunities for a variety of groups, organizations, and professional bodies to assist in educating stakeholders about incidental and secondary findings.
Anticipate and Communicate, the Bioethics Commission’s educational materials, and all other Commission reports are available at bioethics.gov.