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F4‐02‐03: Understanding the Impact of Learning an Amyloid Pet Scan Result: Preliminary Findings from the Sokrates Study
Author(s) -
Karlawish Jason
Publication year - 2016
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1016/j.jalz.2016.06.594
Subject(s) - psychology , medicine , perception , amyloid (mycology) , asymptomatic , clinical psychology , pathology , neuroscience
CSF-results or neuroimaging results. Although overall disclosure of APOE genotype seems safe, some concerns on the potential impact remain.While developing ethics guidelines, challenges concerned the development of a risk disclosure process across diverse geographical and cultural contexts, with a heterogeneous study population and different biomarkers. Important gaps remain in the evidence related to national and cultural differences in perceptions of AD risk, and differences between genetic and biomarkerbased risk information. The focus groups highlighted the importance of providing suggestions for courses of action following disclosure and the role of local primary and secondary care systems in shaping the long-term impact of risk disclosure. Conclusions: Disclosure of APOE seems relatively safe, but no data are available on the consequences of other biomarker disclosure. The combination of a longitudinal cohort study with proof of concept clinical trials poses several ethical challenges. Focus groups suggest a need for a focus on the post-disclosure period.