The formation of the advisory group on risk evaluation education for dementia

• DOI: 10.1002/alz.045562
• Publication Date: 2020-12-07T19:48:57Z
• Authors: Allyson C Rosen; Jessica Alber; Omar M Al‐Janabi; Jalayne J Arias; Shoshana H Bardach; Deborah Blacker; Sharon S Denny; Katherine Dorociak; Dorothy Farrar Ed...; Claire M Erickson; Keith Fargo; Lori Frank; Carey E Gleason; Jill Goldman; Robert C Green; Josh D Grill; Judith L Heidebrink; Victor W Henderson; Cynthia Huling Hu...; Anita Sue Jwa; Jason Karlawish; James J Lah; Jessica B Langbaum; Ashley H Langston; Emily A Largent; Athene KW Lee; Jennifer Lingler; Richard Milne; Raeanne C Moore; Jessica Mozersky; Rachel L Nosheny; Monica W Parker; J Scott Roberts; Emily J Rogalski; Malia Rumbaugh; Andrew J Saykin; Robyn Shapiro; Shana D Stites; Jamie Tyrone; Briana Vogel; Sarah Walter; Li‐San Wang; Ellen Wijsman; Neelum T Aggarwal
• Keywords: Mentorship

Abstract Background When and how to communicate effectively the results of genetic biomarker based prediction, detection, quantification brain substrates dementia involve important ethical legal issues critical for precision medicine. The urgency issue has increased as People Living with Dementia (PLwD) Risk (PwRD) can access direct consumer testing, amyloid targeting drugs, clinical PET scans. To address need effective dissemination consultation, an advisory group was convened that welcomes all interested members. Method Members attend two meetings monthly via phone/computer/WebEx. One meeting is a targeted working focuses on following: 1. Symptomatic (PLwD), 2. Asymptomatic (PwRD), 3. Research, 4. Ethics/Healthcare Law, 5. Trainee/Mentorship. These discussion groups hear from present stakeholders (PLwD/PwRD/caregivers, professional organizations, companies) solicit feedback efficacy their efforts. also “all hands” where they receive updates other presentations emerging research resources. Result composed 104 members who represent advocacy/stakeholders (21%, e.g. organization representatives, FDA), academia (78%, university, funders, foundations), healthcare law (1%). Professions include geneticists, counsellors, researchers, clinicians, ethicists, lawyers. Motivations joining improving communication in contexts, mitigating potential negative impacts (e.g.emotional distress or discrimination), protecting rights know. Topics have included DTC genomics, impact APOE disclosure, genetics personalized medicine, ecological momentary assessment response national international registries (EPAD). Activities survey disclosure practices NIA funded ADCs collaborations ADEAR. Stakeholders varied concerns ranging protect patients right access. Conclusion Membership increasing engaging diverse specialties provide education consultation around use biomarkers related dementia. structure inclusion multiple organizations supports open free collaboration. Future efforts will be developing structured publications.