A new article entitled “Ethical Frameworks for Disclosure of Alzheimer Disease Biomarkers to Research Participants: Conflicting Norms and a Nuanced Policy” has been published in the journal Ethics & Human Research on 31 October 2022. In this article, authors addressed the topic of disclosure of Alzheimer’s disease (AD) biomarkers to research participants. They discussed the ethical dilemma of disclosure drawing on three distinct bodies of ethical guidance literature: on the return of individual research results, on an individual's right to access personal data, and on transparent enrolment into clinical trials. Based on these literatures, they suggested policies for the disclosure of AD biomarker test results in longitudinal observational cohort studies, clinical trials, and hybrid research projects, such as the European Prevention of Alzheimer's Dementia (EPAD) project, in which authors served as an ethics team. Finally, they drew on their experiences in the EPAD consortium to offer recommendations for the disclosure of biomarkers, information provision, and the informed consent process. Jean Georges, Executive Director of Alzheimer Europe, is one of the co-authors of this paper. You can read the paper, here: https://doi.org/10.1002/eahr.500146
