In December 2013, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) released its report, Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts. The report outlines the types of findings that can arise from various tests and procedures in a variety of contexts, and makes 17 recommendations for the ethical and professional management of such findings.
This primer was designed to help researchers understand and implement the Bioethics Commission’s recommendations regarding how to manage incidental and secondary findings ethically in the research setting. Researchers can use it to aid ethical decision making and to ensure that they have considered the ethical implications of these findings in their research. In addition, the final page of this primer provides a list of considerations for researchers to assess whether they have prepared fully for the management of incidental and secondary findings.
Download the researcher primer here.
Researchers can also access the research participant primer, available below, and provide it to potential participants to help them understand what to expect with regard to incidental findings. This conversation series primer was designed to help researchers implement the Bioethics Commission’s first recommendation in Anticipate and Communicate: that practitioners should inform potential recipients about their plan for disclosing and managing incidental and secondary findings, including what findings will and will not be returned. The Bioethics Commission hopes that these materials will help facilitate the conversation that will aid potential research participants during the informed consent process in making autonomous decisions about participating in research.
