Nearly Half of Cognitively Healthy People Choose Not to Learn Amyloid Status
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As biomarker testing becomes more common in Alzheimer’s research, scientists face the tricky question of whether to disclose results. In studies of hypothetical scenarios, including a recent survey commissioned by the Alzheimer’s Association, around 80 percent of Americans say they would want to know if they had preclinical AD. However, new data suggest that fewer people may make that choice in real life. In the May 6 JAMA Network Open, scientists led by Jessica Mozersky at Washington University School of Medicine, St. Louis, reported that only 60 percent of cognitively healthy participants in a longitudinal aging study at the Knight Alzheimer Disease Research Center opted to learn their amyloid status.
- In a longitudinal aging study, 80 percent of cognitively healthy participants said they wanted to know their amyloid status.
- When given a chance, only 60 percent chose to find out.
- Most who said no said they might change their mind if they developed memory problems.
Participants were more likely to decline disclosure if they had a family history of AD, and black people were twice as likely to decline as whites. In interviews, the majority said that learning their status would be a burden. Three-quarters said they might change their minds in the future, for example if they developed memory problems, or if a treatment for preclinical AD became available.
“The authors are to be commended on this important contribution to the field,” Jennifer Lingler at the University of Pittsburgh wrote to Alzforum (comment below). “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.”
Disclosure Process. Participants in the Knight ADRC aging study undergo AD biomarker testing (orange). Of 274 participants invited to learn their results, 164 said yes (dark gray), 110 said no (light gray). [Courtesy of Goswami et al., JAMA Network Open, 2025.]
Previous studies consistently reported that about 80 percent of cognitively healthy people at risk of late-onset AD would want to know their amyloid biomarker results (Aug 2015 conference news; Rahman-Filipiak et al., 2023). Surveys of the Knight ADRC aging cohort found the same thing, with 81 percent of participants indicating they did, even after they learned about the limited predictive power of such testing (Gooblar et al., 2015).
This led WashU scientists to develop a study, WeSHARE, to communicate amyloid biomarker results and evaluate what effect the information has on participants (Hartz et al., 2024 preprint). They invited 274 Knight ADRC participants to take part in WeSHARE (image above). Invited participants were 76 years old on average. Slightly more than half were women; 87 percent were white, 13 percent black. About half had a family history of AD. For two-thirds of them, their available biomarker was an amyloid PET scan; for the other third, it was a blood test. All received an educational brochure describing the limitations of biomarker testing and the pros and cons of knowing, along with a decision-making worksheet. Given the choice, 164 people said yes to WeSHARE, and that study is ongoing.
First author Spondita Goswami focused on those who said no. This amounted to 110 people, or 40 percent of the cohort. Age and sex had no statistically significant effect on whether someone said yes or no, though there was a trend for older people to be less interested. Race had a strong effect, with two-thirds of black participants saying no, compared with one-third of whites. Having a parent with AD also discouraged participation: half of those with a family history of the disease said no, compared with a third without. People were more likely to decline blood test results than PET scan disclosure, but this difference went away after adjusting for confounding factors.
The authors invited all participants to discuss the reasons for their choice, and 26 people agreed to an interview. The demographics of the interview group were about the same as those of the larger cohort of 110 people, and interview answers did not differ by race.
Overall, 21 people said knowing their results would be a burden, causing them to worry and perhaps change their lifestyles and relationships with others. Nine said the knowledge would burden their families. Additionally, 20 people cited negative experiences with AD, such as caring for a relative with the condition.
Others focused on the limited value of the knowledge. Sixteen people said the lack of treatments for preclinical AD affected their choice, and eight said the biomarker findings would be too inconclusive to be useful. Twelve said they currently felt good about their memory, and eight said they had already made preparations for the possibility of AD, such as purchasing long-term care insurance.
Mozersky noted the importance of the educational materials the Knight ADRC provided. “I think this allowed people to reflect on their decision, and may have led more people to say no once they had fully considered the benefits and drawbacks,” she told Alzforum. She is unsure why black participants were more likely to decline. “We need to understand why and make sure it reflects a personal autonomous choice and not a systemic barrier that furthers inequities,” she wrote.
Commenters said the findings jibe with other studies. Joshua Grill at the University of California, Irvine, noted that in Huntington’s disease, too, far fewer people choose to learn their disease status than had said they would in surveys. Sterling Johnson at the University of Wisconsin School of Medicine, Madison, believes the high proportion of people in this cohort with a family history of AD influenced the findings. “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 to want to know their own AD proteinopathy status in the absence of a prevention treatment,” he wrote (comments below).
Jessica Langbaum at Banner Alzheimer’s Institute in Phoenix stressed the importance of offering participants educational materials so they can make informed choices. “I suspect that uptake will vary across populations and over time,” she wrote (comment below). Lingler agreed. “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,” she noted.
“We need to continue to offer the option to learn research results, because many individuals do want them, and it is a way to respect their autonomy and give back something to participants who contribute so much to research,” Mozersky wrote to Alzforum.
The Alzheimer’s Association’s 2025 Facts & Figures report included a survey of more than 1,700 Americans age 45 and older. Eighty percent said they would ask their doctor for AD biomarker testing, and half said they would want to know if they had the disease before they had symptoms. Some racial differences emerged, with Hispanic Americans the most worried about getting AD, and white Americans the least invested in early diagnosis.—Madolyn Bowman Rogers
References
News Citations
Paper Citations
- Rahman-Filipiak A, Lesniak M, Sadaghiyani S, Roberts S, Lichtenberg P, Hampstead BM. Perspectives From Black and White Participants and Care Partners on Return of Amyloid and Tau PET Imaging and Other Research Results. Alzheimer Dis Assoc Disord. 2023 Oct-Dec 01;37(4):274-281. Epub 2023 Oct 30 PubMed.
- Gooblar J, Roe CM, Selsor NJ, Gabel MJ, Morris JC. Attitudes of Research Participants and the General Public Regarding Disclosure of Alzheimer Disease Research Results. JAMA Neurol. 2015 Dec;72(12):1484-90. PubMed.
- Hartz SM, Goswami S, Oliver A, Evans A, Jackson S, Linnenbringer E, Morris JC, Mozersky J. Returning Research Results That Indicate Risk of Alzheimer Disease Dementia to Healthy Participants in Longitudinal Studies (WeSHARE). 2024 Oct 15 10.1101/2024.07.01.24309801 (version 2) medRxiv.
External Citations
Further Reading
No Available Further Reading
Primary Papers
- 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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Comments
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.
UC 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.
University 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.
Banner 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.
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