The biomarker-based diagnosis of Alzheimer's disease. 1—ethical and societal issues

Corinna Porteri, Emiliano Albanese, Charles Scerri, Maria C. Carrillo, Heather M. Snyder, Birgitta Martensson, Mark Baker, Ezio Giacobini, Marina Boccardi, Bengt Winblad, Giovanni B. Frisoni, Samia Hurst, Geneva Task Force for the Roadmap of Alzheimer's Biomarkers

Research output: Contribution to journalReview articlepeer-review

Abstract

There is great interest in the use of biomarkers to assist in the timely identification of Alzheimer's disease (AD) in individuals with mild symptoms. However, the inclusion of AD biomarkers in clinical criteria poses socioethical challenges. The Geneva Task Force for the Roadmap of Alzheimer's Biomarkers was established to deliver a systematic strategic research agenda (aka roadmap) to promote efficient and effective validation of AD biomarkers and to foster their uptake in clinical practice. In this article, we summarize the workshop discussion of the Geneva Task Force “ethical and societal issues” working group, which comprised bioethicists, clinicians, health economists, and representatives of those affected by AD. The working group identified the following key issues that need to be included in the roadmap: improving access to services through timely diagnosis, the need for a diagnostic research protocol before moving to clinical routine, recruitment in diagnostic research protocols in the absence of effective therapy, respect for the autonomy of the individual with mild cognitive impairment in information and consent process and the right not to know biomarkers results, need for counseling programs, disclosure of the diagnosis in a structured environment and the involvement of family members, health policies including the individuals’ views and the protection of their interests, and the economic costs for society.

Original languageEnglish
Pages (from-to)132-140
Number of pages9
JournalNeurobiology of Aging
Volume52
DOIs
Publication statusPublished - Apr 1 2017

Keywords

  • Alzheimer's disease
  • Disclosure of diagnosis
  • Ethics
  • Informed consent
  • Mild cognitive impairment
  • Society

ASJC Scopus subject areas

  • Neuroscience(all)
  • Ageing
  • Clinical Neurology
  • Developmental Biology
  • Geriatrics and Gerontology

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