Goswami S, Hartz SM, Oliver A, Jackson S, Ogungbenle T, Evans A, Linnenbringer E, Moulder KL, Morris JC, Mozersky J. Research Participant Interest in Learning Results of Biomarker Tests for Alzheimer Disease. JAMA Netw Open. 2025 May 1;8(5):e252919. PubMed.
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University of Pittsburgh
The authors are to be commended on this important contribution to the field. Their paper provides a critical reminder that individuals' preferences for learning AD biomarker status vary widely and may be influenced by a complex set of factors, including lived experience.
I think we'd be mistaken to interpret the discrepancy the story describes as a contradiction. Research participants can feel strongly that they should have access to their results yet opt against receiving a particular test result at a particular point in time. And these data support that notion, as the majority of those interviewed by Goswami and colleagues indicated that they reserved the right to change their minds on this and receive their results at a later date.
The implication for research teams is that opportunities to learn individual-level research results should be ongoing, flexible, and supportive of participants' values and preferences.
View all comments by Jennifer LinglerUC Irvine Institute for Memory Impairments and Neurological Disorders
This paper from the Knight ADRC at Washington University adds to the literature on interest in AD biomarker testing in key ways. Whereas much of our knowledge about interest in learning biomarker results has come from hypothetical scenario studies, this work examined actual choices of research participants given a first opportunity to learn their individual biomarker results and a calculated five-year risk of cognitive impairment. The study also emphasizes the choice not to undergo biomarker testing, compared to the predominant focus to date on the choice to learn these results and the impact of doing so.
In their “WeSHARE" study, 40 percent of participants declined the opportunity to learn their AD biomarker results (APOE genotype and amyloid PET, hippocampal volume, or plasma amyloid). This rate is meaningfully lower than observed in most previous surveys and hypothetical studies, including a recent large national survey commissioned by the Alzheimer’s Association. The authors highlight the parallel with Huntington’s disease, where actual testing rates turned out to be much lower than hypothetical studies had suggested they would be.
Though the WeSHARE sample was mostly individuals of white race, individuals of black race were more likely to decline the option to learn their results, as were individuals with a family history of disease. These findings would seem to support two main reasons for not wanting to know one’s biomarker status—1) a desire to not know because of the emotional valence of the result and 2) limitations in our confidence of the meaning of the results. The first of these reasons was endorsed in qualitative interviews conducted by the investigators. The second might be more salient for individuals historically underrepresented in AD biomarker research. Only three such individuals participated in the qualitative elements of the study.
Key limitations are the single site approach and the potential for further sample bias related to any differences between WeSHARE participants (n=274) and the larger cohort from which they were recruited (n=863). The authors also chose to include individuals who simply did not respond to the invitation to participate with those who explicitly declined the opportunity. This difference could be meaningful; one wonders about the results of sensitivity analyses for the latter outcome (the sample size may have prevented such exploration). Similarly, it would be quite interesting to know if the results differed by biomarker test. In analyses of one clinical trial population, disclosure outcomes differed somewhat based on whether participants underwent PET vs. CSF biomarker testing (Grill et al., 2024).
References:
Grill JD, Raman R, Ernstrom K, Wang S, Donohue MC, Aisen PS, Karlawish J, Henley D, Romano G, Novak G, Brashear HR, Sperling RA. Immediate Reactions to Alzheimer Biomarker Disclosure in Cognitively Unimpaired Individuals in a Global Truncated Randomized Trial. Neurol Clin Pract. 2024 Apr;14(2):e200265. Epub 2024 Jan 12 PubMed.
View all comments by Joshua GrillUniversity of Wisconsin-Madison
The difference between Goswami et al. and the Alzheimer's Association study is the enrichment for family history of dementia due to presumed AD. These individuals have seen the devastating advanced stages of the disease in a family member, and it is understandable that they may be a little less likely (60 percent versus more than 80 percent willingness) to want to know their own AD proteinopathy status in the absence of a prevention treatment. If any of the ongoing prevention trials with amyloid removal therapy are successful, then I suspect we will see a rather large uptick in willingness to know one’s amyloid status.
View all comments by Sterling JohnsonBanner Alzheimer's Institute
Goswami et al.’s results speak to the importance of offering education to participants prior to returning results. They illustrate the important of allowing individuals to assess how certain considerations of learning results (e.g., emotional, family, insurance, access to healthcare) impact them, and whether or not to proceed with learning results. I suspect that uptake of learning results will vary across populations and over time, particularly as more results become actionable, e.g., when a prevention treatment is available for cognitively unimpaired adults who have biomarker evidence of disease.
The results also speak to the importance of offering education in clinical settings, when tests may be ordered and results loaded into a patient’s medical record without much explanation or connection to resources. In this setting, patients will need readily available access to interactive platforms that can help communicate the considerations of learning the test result(s). Assuming patients do decide to learn their result/access it via their health portal, such platforms can help in the communication of what the results mean for them while they wait to speak with their clinician at their next appointment.
View all comments by Jessica LangbaumMake a Comment
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