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

Now Available: Set of Primers for Practitioners on Management of Incidental and Secondary Findings

To continue its support of bioethics education, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has developed and posted to Bioethics.gov a new set of primers to inform a variety of practitioners on the ethical management of incidental and secondary findings. This new set of primers includes one for clinicians, one for researchers, and one for direct-to-consumer (DTC) providers. Each primer guides practitioners as they grapple with the issues related to incidental and secondary findings. The primers help practitioners consider the Bioethics Commission’s recommendations in Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Context in an easy to use format.

Each primer begins with a description of incidental and secondary findings, and the types of tests and procedures likely to uncover them. Then, the primers guide practitioners in answering questions about ethical duties with regard to incidental and secondary findings.

For example, the primer for clinicians highlights a clinician’s role in shared decision making and in communicating potential incidental and secondary findings. The researcher primer describes the factors that contribute to an ethical plan for management of incidental and secondary findings, and emphasizes the central role of informed consent. And the DTC primer describes some potential duties to consumers, for example, in developing industry-wide best practices.

The primers also include tables, such as the Bioethics Commission’s taxonomy of findings, and relevant ethical principles and their application to incidental and secondary findings in each context.

The goal of this set of primers is to help practitioners in each context understand the Bioethics Commission’s recommendations, and assist in incorporating those recommendations into their work. Each primer ends with a list of considerations for ethical management of incidental findings in the particular context.

All Bioethics Commission educational materials are available for free use and can be downloaded at Bioethics.gov. In the coming weeks an additional set of primers to accompany Anticipate and Communicate will be posted to Bioethics.gov to guide potential recipients of incidental findings, including patients, research participants, and DTC consumers. The Bioethics Commission welcomes feedback on all of its educational materials at education@bioethics.gov.

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About blog.Bioethics.gov

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

Learn more about the 2009 - 2017 Presidential Commission for the Study of Bioethical Issues.