Ethical Considerations in Communicating Alzheimer’s Disease Neuroimaging Biomarker Test Results to Symptomatic Individuals

This article examines ethical issues associated with the return of AD neuroimaging results to cognitively symptomatic individuals. Following a review of research on patient and study partner reactions to learning the results of biomarker testing for AD, we examine ethical issues that will be of increasing significance as the field transitions to an era wherein disease-modifying treatments for AD become available. We first review the ethical justification for returning AD biomarker results to individuals who desire them. We then address a more novel question: whether, and to what extent, clinicians or clinical researchers should influence the decisions of individuals who are potentially reluctant to learn their AD imaging results. We argue that in many cases, it is ethically correct to explore, and sometimes alter, factors that may be inhibiting one’s desire to know these test results. Our argument is grounded in the premise that having more complete information about changes that may be happening in one’s brain will generally yield more informed participation in decisions about one’s own care, thereby promoting autonomy. Finally, on the assumption that we have established that it is frequently ethically correct to try to communicate testing information, we examine considerations regarding (not whether but) how this is best accomplished, discussing the concept of responsible transparency. We suggest that both (1) explorations of why one may or may not want to learn results of AD biomarker imaging and (2) the responsible return of such test results is best accomplished using a transactional model of communication.