TY - JOUR
T1 - The biomarker-based diagnosis of Alzheimer's disease. 1—ethical and societal issues
AU - Porteri, Corinna
AU - Albanese, Emiliano
AU - Scerri, Charles
AU - Carrillo, Maria C.
AU - Snyder, Heather M.
AU - Martensson, Birgitta
AU - Baker, Mark
AU - Giacobini, Ezio
AU - Boccardi, Marina
AU - Winblad, Bengt
AU - Frisoni, Giovanni B.
AU - Hurst, Samia
AU - Geneva Task Force for the Roadmap of Alzheimer's Biomarkers
PY - 2017/4/1
Y1 - 2017/4/1
N2 - 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.
AB - 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.
KW - Alzheimer's disease
KW - Disclosure of diagnosis
KW - Ethics
KW - Informed consent
KW - Mild cognitive impairment
KW - Society
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U2 - 10.1016/j.neurobiolaging.2016.07.011
DO - 10.1016/j.neurobiolaging.2016.07.011
M3 - Review article
C2 - 28317644
AN - SCOPUS:85015628831
VL - 52
SP - 132
EP - 140
JO - Neurobiology of Aging
JF - Neurobiology of Aging
SN - 0197-4580
ER -