Ethical Frameworks for Disclosure of Alzheimer Disease Biomarkers to Research Participants: Conflicting Norms and a Nuanced Policy

Author:

Bunnik Eline M.1,Smedinga Marthe2,Milne Richard3,Georges Jean4,Richard Edo5,Schermer Maartje H. N.6

Affiliation:

1. Associate professor at the Erasmus University Medical Center in the Department of Medical Ethics, Philosophy and History of Medicine

2. Scientific secretary for the subcommittee on ethics and societal aspects at the Netherlands Commission on Genetic Modification

3. Sociologist of science, technology, and medicine, the head of research and dialogue at Wellcome Connecting Science, and the deputy director of the Kavli Centre for Ethics, Science, and the Public at the University of Cambridge

4. Executive director of Alzheimer Europe

5. Professor of neurology at Amsterdam University Medical Centre and a neurologist at the Department of Neurology at the Donders Institute for Brain, Cognition and Behaviour at Radboud University Medical Centre

6. Professor of philosophy of medicine at the Erasmus University Medical Center in the Department of Ethics, Philosophy and History of Medicine

Funder

Wellcome Trust

Publisher

Wiley

Subject

Health (social science)

Reference78 articles.

1. Biomarkers for the Early Detection and Progression of Alzheimer’s Disease

2. Registries and Cohorts to Accelerate Early Phase Alzheimer's Trials. A Report from the E.U./U.S. Clinical Trials in Alzheimer's Disease Task Force;Aisen P.;Journal of Prevention of Alzheimer's Disease,2016

3. Global Alzheimer's Platform Trial Ready Cohorts for the Prevention of Alzheimer's Dementia;Sperling R.;Journal of Prevention of Alzheimer's Disease,2016

4. European Prevention of Alzheimer's Dementia Longitudinal Cohort Study (EPAD LCS): Study Protocol;Solomon A.;BMJ Open,2019

5. Ibid.

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