Protecting Progress: Communicating and Using Dementia Risk Evidence

A transformation in our understanding of dementia is happening through advances in biomarkers, genetics, and other data used as dementia risk evidence (DRE) promising a future for precision dementia care. These data are increasingly informing clinical diagnosis and management; however, advances are also revealing ethical and legal gaps and practical questions about how to use and communicate these data. Investigators often use DRE in research. When participants ask for their personal results, investigators have concerns. Will data that was intended to study groups be valid for individuals? Will sharing data cause distress? Debates around sharing DRE became heated when blood-based amyloid tests and amyloid reducing drugs appeared poised to enable clinicians easily to identify people with elevated brain amyloid and reduce it with a drug. Such an approach would transform the traditional role of genetic and biomarker-based DRE from investigational to foundational; however, then the high costs, uncertain clinical benefits and risks of the therapy led to an urgent need for education to support clinical decision making. Further complicating DRE use are direct to consumer genetic testing and increasingly available biomarker testing. Withholding DRE becomes less feasible and public education around responsible use and understanding become vital. A critical answer to these legal and ethical issues is supporting education that clearly delineates known risks, benefits, and gaps in knowledge, and provides communication to promote understanding among researchers, clinicians, patients, and all stakeholders. The purpose of this mini forum is to explain issues relevant to dementia. Contributors include relevant submissions to our Ethics Review and from the Advisory Group on Risk Evidence Education for Dementia (

Give us your opinion by commenting below!
Would you want your dementia-related biomarkers/genetics?
Would you want your results in your medical record?
Should researchers share all data with participants if they are asked?

What questions have we missed?
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Papers in the Mini-Forum
The introduction to the Mini-Forum [1] provides an overview and describes general concepts and resource documents that support more informed discussions for individuals and interdisciplinary groups. The first contribution is a proposed “Bill of Rights”, from people living with and at risk for dementia and stakeholder organizations advocating increased sharing of individual level results [2]. Next, we describe the structure of a multidisciplinary, working group that is open to all and which promotes ongoing discussion about best practices ( [3]. There are next several papers on issues related to using and understanding blood-based biomarkers including describing best practices [4], and in potentially improving diagnosis in diverse people in low and middle income countries [5]. Two papers describe how validating biomarkers through the study of biomarker-cognitive associations is enhanced by innovative approaches to analyses [6] and by neuroscience-informed cognitive measures [7]. There is also a public health-related discussion around the ethics of resource allocation based on dementia risk [8]. Several other papers discuss how DRE is understood and represented to clinicians and consumers. Two papers discuss how DRE is represented in the medical record, one stressing the importance of placing DRE in context to avoid misunderstanding by clinicians [9] and one on how people choose direct to consumer testing to avoid having DRE in their medical record [10]. One paper describes an approach to enriching understanding of stakeholders and research participants through involving them in research conferences [11]. Another paper describes a survey of perspectives of frontline health providers, geriatricians, toward APOE genetic testing [12]. Finally, biomarker testing is typically in people with symptoms but there are two papers focused on issues related to using and sharing DRE in people without symptoms in research. One paper describes the benefit of involving partners in longitudinal studies of people with intact cognition to ensure wishes are respected after disease progression [13]. A final paper provides guidance in what to tell participants about DRE as effective therapies become available [14].

1. Rosen AC (2022) Communicating and using dementia risk evidence. J Alzheimers Dis 90, 933-944.
2. Walter S, Taylor A, Tyrone J, Langer S, Pagan JR, Huling-Hummel C, Wheaton B, Zallen DT, Rosen AC (2022) Disclosing individual results in dementia research: a proposed study participant’s bill of rights. J Alzheimers Dis 90, 945-952.
3. Rosen AC, Arrias JJ, Ashford JW, Blacker D, Chhatwal JP, Chin NA, Clark L, Denny SS, Goldman J, Gleason CE, Grill JD, Heidebrink JL, Henderson VW, Lavacot JA, Lingler JH, Menon M, Nosheny RL, Oliveira FF, Parker MW, Rahman-Filipiak A, Revoori A, Rumbaugh M, Sanchez D, Schindler S, Schwartz C, Toy L, Tyrone J, Walter S, Wang LS, Wijsman EM, Zallen DT, Aggarwal NT; members of AGREEDementia (2022) The Advisory Group on Risk Evidence Education for Dementia: multidisciplinary and open to all. J Alzheimers Dis 90, 953-962.
4. Galasko DR, Grill JD, Lingler JH, Heidebrink JL, and for the Symptomatic Subcommittee of the Advisory Group on Risk Evidence Education for Dementia (AGREEDementia) (2022) A blood test for Alzheimer’s disease: it’s about time or not ready for prime time? J Alzheimers Dis 90, 963-966.
5. Karikari T (2022) Blood tests for Alzheimer’s disease: increasing efforts to expand and diversify research participation is critical for widespread validation and acceptance. J Alzheimers Dis 90, 967-974.
6. Schindler SE (2022) Predicting symptom onset in sporadic Alzheimer’s disease: “how long do i have?”. J Alzheimers Dis 90, 975-979.
7. Parra MA (2022) Barriers to effective memory assessments for Alzheimer’s disease. J Alzheimers Dis 90, 981-988.
8. Daly T, Mastroleo I, Migliaccio R (2022) Avoiding over-reliance on multi-domain interventions for dementia prevention. J Alzheimers Dis 90, 989-992.
9. Lerner A (2022) Biomarkers and mindfulness: a way forward. J Alzheimers Dis 90, 993-996.
10. Zallen DT (2022) Alzheimer disease: risk testing and the medical record. J Alzheimers Dis 90, 997-999.
11. Walter S, Kim AB, Flores M, Ziolkowski J, Shaffer E, Aggarwal NT (2022) Including general audiences in a virtual scientific dementia conference: will they get anything from it? J Alzheimers Dis 90, 1001-1009.
12. Arias JJ, Lin GA, Tyler AM, Douglas MP, Phillips KA (2022) Geriatricians’ perspectives on the multiple dimensions of utility of genetic testing for Alzheimer’s disease: a qualitative study. J Alzheimers Dis 90, 1011-1019.
13. Largent EA, Bhardwaj T, Clapp JT, Sykes OS, Harkins K, Grill JD (2022) You’ve got a friend in me: how cognitively unimpaired older adults select a study partner to participate with them in Alzheimer’s disease research. J Alzheimers Dis 90, 1021-1033.
14. Mozersky J, Roberts JS, Rumbaugh M, Chhatwal J, Wijsman EM, Galasko D, Blacker D (2022) Spillover: The approval of new medications for Alzheimer’s disease dementia will impact biomarker disclosure among asymptomatic individuals. J Alzheimers Dis 90, 1035-1043.

Last comment on 30 November 2022 by Allyson Rosen, PhD, ABPP-CN


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