Graham, M., Hallowell, N., & Savulescu, J. (2021).
Journal of Law, Medicine & Ethics, 49(2), 269-281.
doi:10.1017/jme.2021.38
Abstract
Neuroimaging research regularly yields “incidental findings”: observations of potential clinical significance in healthy volunteers or patients, but which are unrelated to the purpose or variables of the study.
From the Conclusion
Appealing to considerations of distributive justice provides an answer for these difficult cases. Data about a patient’s brain that may be generated by a neuroimaging scan in a research context is not something a healthy participant is entitled to as a matter of basic care. Accordingly, a researcher has no obligation to generate this information by performing additional scans (i.e., to “look” for incidental findings). Similarly, if a researcher discovers an incidental finding of unknown or uncertain clinical significance, they are not required to refer a participant for follow-up. Screening for brain abnormalities is not a requirement of basic care, and the burdens of follow-up on the health system (given the potential benefits) are inconsistent with distributive justice. This approach thus avoids the problem of trying to determine whether disclosure (is likely to) promote autonomy or benefit the patient. Rather, it requires researchers to ensure that participants are not deprived of anything to which they are entitled as a matter of distributive justice. This includes all of the protections to which participants in research are normally entitled, as well as the disclosure of clinically significant incidental findings.