The Presidential Commission for the Study of Bioethical Issues is requesting public comment on the ethical, legal, and social issues raised by “incidental findings” (e.g., information obtained from testing that was not its intended or expected object) that arise from genetic and genomic testing, imaging, and testing of biological specimens conducted in the clinical, research, and direct-to-consumer contexts. The Commission is particularly interested in receiving public commentary regarding:
- The likelihood of such incidental findings and any related case studies;
- What, if anything, patients, participants, and/or consumers should be told about incidental findings resulting from large-scale genetic testing, imaging, and testing of biological specimens before tests are conducted;
- Any duties or ethical obligations that clinicians, researchers, and direct-to-consumer companies might have to actively look for certain incidental findings;
- Best practices, methods, and mechanisms for determining when and how incidental findings should be returned to patients, participants, and/or consumers;
- The acceptability of holding back information--such as establishing “no return” policies, or advance stipulations that no incidental findings will be returned; and,
- Any best practices or recommendations regarding incidental findings that apply no matter the type of test or context.
Comments will be accepted until July 5, 2013. Additional information about the Commission’s work in this area is available here.