The future of Alzheimer’s biomarker disclosure: A pragmatic approach to returning results to participants
Friday, October 13, 2023
5:00 PM – 6:15 PM ET
Location: Atlantic (Third Floor)
Disease-modifying therapies, novel, lower cost testing methods, and growing patient interest are making Alzheimer’s disease (AD) biomarker disclosure more urgent. Biomarkers are objective measures of AD pathology that can be measured in vivo. Prior studies of AD biomarker disclosure have focused on the participant experience and on resolving ethical concerns. Results demonstrate that participants understand and appreciate the meaning of their results and that disclosure is safe (i.e., no depression, anxiety, or suicidality). These studies, though, have had notable limitations: (1) disclosure has been highly formulaic; (2) samples have not been representative; and (3) there has been no effort to characterized clinicians’ perspectives. In this paper, I describe an effort to address these limitations by incorporating AD biomarker disclosure into a multi-site, longitudinal cohort study aimed at documenting progression of AD in a nationally representative sample. The pragmatic approach emphasizes both streamlined clinician training and clinician discretion to approximate real-world clinical practice. The study seeks to determine how to balance considerations of participant autonomy and a right-to-know their AD biomarkers while also acknowledging some clinicians’ paternalistic preference not to disclose this charged information and ethical concerns that arise when communicating novel health information. As AD biomarker testing becomes less expensive and more medically actionable, disclosure will become more routine not just in research but in care, and more clinicians will be expected to disclose. This study will advance our understanding of AD biomarker disclosure processes and aid in the development of appropriate informed consent and clinician training materials.
Emily Largent – Medical Ethics and Health Policy – University of Pennsylvania