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Incidental Findings Primers

When the White House's Bioethics Commission released its report in December on how incidental findings discovered in clinical care and research should be handled, it placed a special emphasis on the importance of anticipating such results and communicating about how they will be managed.

The commission said new technologies like genome sequencing and advanced imaging tools mean that incidental findings are to be expected and should be anticipated, and that communication between physicians, patients, labs, counselors, professional organizations, and others would be essential in grappling with the ethical and practical ramifications of these findings.

Now, the commission is offering a bit of help via the release of new primers to guide practitioners on how they might handle incidental and secondary findings, in part by implementing the report's recommendations. The primers include tables, such as the commission's taxonomy of findings, and relevant ethical principles and how they apply to these findings in different contexts.

These primers are aimed at clinicians, researchers, and direct-to-consumer firms.

The researchers' section, for example, offers a model for implementing the report's recommendations, such as that research institutions should have procedures and resources in place to manage incidental findings. These include having informed consent materials that convey the plan for incidental findings, plans for incorporating outside expertise to evaluate findings, and a clear policy that outlines follow-up procedures, among others.

A list of FAQs is included in the primer that details the different types of incidental findings researchers may encounter and a list of the types of tests that are most likely to return incidental results, particularly genome sequencing, biospecimen testing, and imaging. The materials also lay out the ethical foundation for the recommendations, and how an institution may know if it has an ethically sound policy for dealing with these findings.