The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has just released a set of educational materials on incidental findings that it developed for patients, research participants, and consumers. In early May, the Bioethics Commission released primers to guide clinicians, researchers, and direct-to-consumer (DTC) companies – health professionals who manage these types of findings. This latest set of primers is addressed to the other party in those relationships – those who might be receiving unanticipated findings – be they patients in a clinical context, participants in a research context, or consumers in a DTC context.
The conversation series primers, available on Bioethics.gov/education, guide potential recipients in preparing for incidental findings across contexts and operationalize the Bioethics Commission’s discussion of incidental and secondary findings in its December 2013 report, Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Context.
To make their recommendations on incidental and secondary findings accessible to a wide range of potential recipients, the Bioethics Commission created this set of primers as a conversation series – a set of tools that can be used to get conversation started between findings managers and potential findings recipients – for example, doctor and patient, or researcher and participant. As they order tests, doctors can provide the patient primer to their patients. Researchers could use the participant primer as they obtain informed consent from study participants. The primers give a description of incidental findings in each context to help potential recipients understand how incidental findings are different from the primary findings they or their practitioners are seeking. Each primer helps potential recipients understand what those findings might be and prepares them to ask the clinician, researcher, or DTC provider relevant and important questions.
The primer for patients describes types of tests that might result in incidental findings, for example, genetic tests, blood or urine tests, and imaging. It provides some questions that patients can ask their clinicians. For example, the primer suggests asking clinicians “what might you find,” “what will you tell me,” “how do you intend to follow up on any incidental findings,” and “what if I don’t want to know certain results?” The primers for research participants and consumers provide similar information on tests that might result in incidental findings and what to ask the research team or the DTC provider.
The primers also include a variety of hypothetical recipient experiences with incidental findings. For example, the research participant primer presents a case in which a participant underwent a brain scan as part of a research study and found out she had a brain abnormality.
The Bioethics Commission supports bioethics education through these and other educational materials based on its reports and recommendations. All materials are available for free download at Bioethics.gov. The Bioethics Commission welcomes feedback on all of its educational materials at firstname.lastname@example.org.