Affiliations: Department of Medical Ethics and Health Policy, Perlman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA
Correspondence:
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Correspondence to: Shana Stites, PsyD, MS, MA, University of Pennsylvania, 3615 Chestnut Street, Philadelphia, PA19104, USA. Tel.: +1 215 349 8225; E-mail: Stites@upenn.edu.
Abstract: Richard Milne and colleagues (2018) present the results of a study to discover what cognitively unimpaired research participants hope to gain by learning Alzheimer’s disease (AD) biomarker results and the associated risk for AD dementia. Their results are useful to develop procedures to safely disclose AD biomarker results in prevention trials. They also foreshadow the ethical and pragmatic challenges of using AD biomarkers in routine clinical practice. What is currently known is largely from studies of cognitively unimpaired or mildly impaired individuals who learned they had genetic markers of AD. Little is known about learning biomarker results. Milne and colleagues found that participants expect they will routinely learn risk reduction strategies and have access to follow up care. Can we meet these expectations? Mixed evidence supports effective therapies for delaying symptoms of AD and virtually nonexistent evidence guides prevention of AD. Healthcare resources, including follow-up, are designed to manage patients who have clinical symptoms—not the potentially large numbers of unimpaired individuals. To meet these needs, researchers who disclose AD biomarker results to cognitively unimpaired research participants may have an obligation to develop effective interventions and provide follow up care.
Keywords: Alzheimer’s disease, biomarkers, early diagnosis, ethics, result disclosure
