title: Stakeholders' Perspectives on Preclinical Testing for Alzheimer's Disease.
abstract: OBJECTIVE
  Progress towards validating amyloid beta as an early indicator of Alzheimer's disease (AD) heightens the need for evaluation of stakeholders' perspectives of the benefits and harms of preclinical testing in asymptomatic individuals.
  
  
  METHODS
  Investigators conducted and analyzed 14 semi-structured interviews with family members of patients diagnosed with AD.
  
  
  RESULTS
  Participants reported benefits, including the potential to seek treatment, make lifestyle changes, and prepare for cognitive impairment. Participants identified harms, including social harms, adverse life decisions, and psychological harms. Nine participants reported either a "positive global perspective" or a "positive global perspective (qualified)."
  
  
  CONCLUSIONS
  Results from this study characterized stakeholders' perspectives on the potential benefits and harms of clinical use of preclinical testing for AD. Investigators used data from this study to develop a framework that contributes to ongoing discussions that will evaluate widespread adoption of preclinical testing and will inform future research.
authors.affiliation: Cleveland Clinic Foundation, 9500 Euclid Ave., JJ60, Cleveland, Ohio 44118 USA. ariasj@ccf.org.
authors.forename: Jalayne J
authors.initials: JJ
authors.lastname: Arias
authors.affiliation: Cleveland Clinic Foundation, 9500 Euclid Ave., JJ60, Cleveland, Ohio 44118 USA.
authors.forename: Jeffrey
authors.initials: J
authors.lastname: Cummings
authors.affiliation: Cleveland Clinic Foundation, 9500 Euclid Ave., JJ60, Cleveland, Ohio 44118 USA.
authors.forename: Alexander Rae
authors.initials: AR
authors.lastname: Grant
authors.affiliation: Cleveland Clinic Foundation, 9500 Euclid Ave., JJ60, Cleveland, Ohio 44118 USA.
authors.forename: Paul J
authors.initials: PJ
authors.lastname: Ford
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000544:Alzheimer Disease / Q000134:cerebrospinal fluid / Q000175:diagnosis* / Q000000981:diagnostic imaging / Q000523:psychology; D016229:Amyloid beta-Peptides / Q000134:cerebrospinal fluid; D015415:Biomarkers / Q000134:cerebrospinal fluid; D003657:Decision Making; D018450:Disease Progression; D005190:Family / Q000523:psychology; D005260:Female; D015438:Health Behavior; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008403:Mass Screening / Q000009:adverse effects / Q000941:ethics / Q000523:psychology; D008875:Middle Aged; D049268:Positron-Emission Tomography; D040242:Risk Reduction Behavior; D013694:Temperament
chemical_list: D016229:Amyloid beta-Peptides; D015415:Biomarkers