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

Incidental Findings Report is Timely

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) recently released Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts.

This report is the first report released by a national bioethics commission on return of results in over ten years. In 1999 the National Bioethics Advisory Commission released a report entitled Research Involving Human Biological Materials: Ethical Issues and Policy Guidance that focused on returning results in the research context. More recent professional guidance has provided more targeted considerations of incidental findings in specific modalities and contexts. The Bioethics Commission’s cross-context and cross-modality look at incidental and secondary findings in Anticipate and Communicate adds to this scholarship by providing a broad ethical analysis that can be applied in many settings.

Specific professional guidance about the ethical management of incidental and secondary findings supports appropriate clinical, research, and direct-to-consumer practices. Practitioners across contexts are receiving seemingly conflicting advice, or in many cases, no professional guidance at all on how to manage these findings.

Accordingly, in Anticipate and Communicate, the Bioethics Commission called upon professional groups to develop guidelines and best practices for the management of incidental and secondary findings (Recommendation 2)—work that is ongoing. For example, the American College of Medical Genetics and Genomics (ACMG) released ACMG Recommendations for Reporting Incidental Finding in Clinical Exome and Genome Sequencing in March of this year. In 2011, the Endocrine Society developed guidelines for clinicians to determine what action to take for incidental findings discovered on the pituitary gland. And in 2010, the American College of Radiology released guidance on the management of incidental findings revealed during abdominal computed tomography (CT) scans.

The Bioethics Commission’s recommendations for the management of incidental and secondary findings support and encourage these practitioners, professional groups, and other stakeholders who are beginning to develop guidelines to ethically manage such findings.  

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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

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