Summary: New research reveals a striking gap between people’s theoretical desire to know their Alzheimer’s disease risk and their real-life decisions when results are actually offered. In a study of cognitively normal volunteers, only 60% chose to learn their estimated risk when given the chance, despite 81% expressing prior interest.
Concerns about anxiety, burden on family, and the lack of effective treatments were major reasons for declining results. The findings highlight the ethical and psychological complexities of sharing predictive health information and stress the importance of offering participants genuine choice without pressure.
Key Facts:
- Interest vs. Action Gap: Only 60% of participants chose to receive their Alzheimer’s risk despite 81% expressing earlier interest.
- Emotional Burden a Key Factor: Common reasons for declining included fear of anxiety and the absence of treatment options.
- Need for Sensitive Approaches: Findings emphasize designing studies that respect participants’ right to decline risk information.
Source: WUSTL
As researchers make progress in understanding how Alzheimer’s disease develops, there are growing opportunities for healthy research participants to learn their risk of developing Alzheimer’s disease dementia in the future.
While many organizations often advocate for investigators to share risk estimates with individual participants, there are ethical concerns around doing so, given that there are no medical interventions to change that risk.
A new study from Washington University School of Medicine in St. Louis examines the choices such healthy research volunteers make when given the opportunity to learn their risk of developing Alzheimer’s disease dementia.
The researchers found a large discrepancy between the percentage of participants who said they would like to learn their risk if such estimates became available and the percentage who followed through to learn those results when given the actual opportunity.
The knowledge could help researchers design studies that offer the option of receiving results in ways that don’t pressure participants into making one choice over another.
The study also emphasizes the importance of ensuring participants truly want their research results because hypothetical interest does not necessarily translate into wanting to learn one’s risk of Alzheimer’s disease dementia when it is actually offered.
The study is published May 6 in JAMA Network Open.
“In general, there is movement toward giving research participants and patients their test results, even in situations when nothing can be done with those results,” said senior author Jessica Mozersky, PhD, an assistant professor of medicine at the Bioethics Research Center and an investigator at the Charles F. and Joanne Knight Alzheimer Disease Research Center, both at WashU Medicine.
“But our study suggests that in sensitive cases — such as when estimating the risk of developing a debilitating and deadly disease — people should have the option to not know.”
In recent years, the National Academies of Sciences, Engineering and Medicine have recommended that research study designs in general include the option to return test results to participants, even when such results can’t be acted on.
Similarly, a committee of study participants, their care partners and members of dementia advocacy organizations recently proposed a bill of rights for Alzheimer’s disease research participants that advocates for access to such results.
At the same time, ethical concerns remain because of the possibility of causing anxiety and other harm to participants who learn they are at high risk of developing a debilitating and incurable dementia.
Unlike preventive options for individuals who learn they are at high genetic risk of certain cancers, for example, there are currently no approved preventive treatments or medical interventions available to stave off Alzheimer’s disease dementia.
To get a clearer picture of who declines Alzheimer’s disease dementia risk results and why, Mozersky and her colleagues turned to long-running research at WashU Medicine’s Knight Alzheimer Disease Research Center. Since 1979, the Memory & Aging Project has provided a framework to study brain function in participants as they age.
Over the decades, the project has evolved and expanded into several long-running studies of the development and progression of Alzheimer’s disease, including the development of biomarker tests to determine risk.
For the current study, Mozersky’s team focused on cognitively normal volunteers who underwent a battery of tests, including genetic tests, blood draws and brain scans, from which researchers could estimate their probability of developing Alzheimer’s disease dementia over the following five years.
Participants originally joined the long-term study understanding that they would not have the option to receive their own risk results. Even so, Mozersky said, over the years many have expressed a theoretical interest in learning their results.
The study, co-led with Sarah M. Hartz, MD, PhD, a professor of psychiatry at WashU Medicine, offered results to a subset of participants in the Memory & Aging project — 274 participants — to assess the psychological impact of learning their risk, and the factors they consider when making that decision.
Before deciding, participants received an information guide explaining how risk is estimated and listing some examples of pros and cons of learning their results. For example, on the pro side, some people may learn their risk is lower than they might have expected.
And if biomarker test results suggest a participant is at high risk of developing Alzheimer’s disease dementia over the next five years, they may become eligible to participate in clinical trials of investigational prevention strategies.
On the other hand, knowledge of high risk may cause anxiety or complicate the purchase of some types of insurance.
When the results were theoretical, 81% of people in the larger, long-term research said they would choose to know. In contrast, when real results were offered to the 274 participants in the Memory & Aging Project, only 60% opted to receive them.
Participants with a parental history of Alzheimer’s disease and participants who self-identified as African American were more likely than others to decline the results.
A sample of participants who declined to learn their results were interviewed afterward, and the most common reasons given included that knowing would be a burden to themselves or their family members, their own negative experiences and perceptions of Alzheimer’s disease dementia, that they feel good about their memory currently, that they’re already prepared for the disease, and that there is still uncertainty in predictions of disease risk.
“The lack of preventive treatments is also a big factor in declining to receive the results of biomarker tests among people without symptoms of Alzheimer’s disease dementia,” Mozersky said.
“When we conducted interviews with some participants to better understand their choice not to know, many said that a new effective treatment might change their mind, if it became available.”
Because the results are only available through research studies, they are not added to the participant’s medical record by the investigators. Still, such results could end up in a patient’s medical record if a participant shares them with their doctor.
“We plan to continue our research into the complexities of these questions, especially as returning results to research participants becomes more common, even if those results can’t be acted on yet,” Mozersky said.
Goswami S, Hartz SM, Oliver A, Jackson S, Oluwatomisin O, Evans A, Linnenbringer E, Moulder K, Morris J, Mozersky J. Research participant interest in learning results of biomarker tests for Alzheimer disease. JAMA Network Open. May 6, 2025.
Funding: This work was supported by the National Institutes of Health (NIH), grant numbers R01 AG065234, P30AG066444, P01AG003991, P01AG026276 and UL1TR002345.
Washington University has a financial stake in C2N diagnostics, which makes the Precivity AD™ plasma Alzheimer’s Disease biomarker test, one of the test results offered to participants in this study. No individual researcher who conducted this study has a personal financial interest in C2N diagnostics.
About this Alzheimer’s disease research news
Author: Jessica Church
Source: WUSTL
Contact: Jessica Church – WUSTL
Image: The image is credited to Neuroscience News
Original Research: Open access.
“Research participant interest in learning results of biomarker tests for Alzheimer disease” by Jessica Mozersky et al. JAMA Network Open
Abstract
Research participant interest in learning results of biomarker tests for Alzheimer disease
Importance
While available evidence suggests there are not major psychosocial harms of return of research results, there are limited data on uptake of Alzheimer disease (AD) research results or reasons for declining to learn results among participants in AD research studies.
Objectives
To quantitatively and qualitatively evaluate who declines to learn individual AD biomarker research results and what factors are associated with the decision.
Design, Setting, and Participants
This observational cohort study was conducted between November 1, 2020, and April 15, 2024, among participants aged 65 years or older with unimpaired cognition and available biomarker data (apolipoprotein E genotype and either imaging [amyloid positron emission tomography and magnetic resonance imaging] or plasma amyloid level) enrolled in a longitudinal cohort of cognitive aging at the Knight Alzheimer Disease Research Center.
Exposure
Participants with no prior option to receive research results were offered the option to learn these results.
Main Outcome and Measures
The primary outcome was the decision to receive AD research biomarker results. Associations of this decision with demographic factors including self-identified race, parental history of AD, age, gender, and type of biomarker result offered (imaging or plasma) were assessed using χ2 tests and semiparametric log-binomial regression. Semistructured qualitative interviews with a subset of participants who declined receiving research results explored reasons for declining.
Results
Of the 274 participants who were offered their research results (mean [SD] age, 75.9 [5.8] years; 158 women [58%]; 35 Black [13%]; and 239 White [87%]), 110 (40%) declined. Black participants were more likely to decline than White participants (adjusted risk ratio, 1.89; 95% CI, 1.43-2.50). Participants with a known parental history of AD dementia were more likely to decline than those without (adjusted risk ratio, 1.49; 95% CI, 1.12-1.98).
Qualitative interviews found the following reasons for declining: knowing would be a burden, negative experiences and perceptions of AD dementia, feeling good about memory currently, familial burden, already being prepared, and the uncertainty of results.
Conclusions and Relevance
In this study of participants enrolled in a longitudinal aging study offered their research results, those with a parental history of AD dementia and Black participants were significantly more likely to decline.
Qualitative interviews suggest that a family history of AD may create negative experiences and perceptions of the disease, which may influence the decision to learn results. Further research is needed to better understand racial differences in uptake and ensure that the choice to receive research results reflects individual preferences and wishes.
