Summary: New research from Washington University in St. Louis reveals a large gap between people’s stated interest in learning their risk for Alzheimer’s disease and their actual choices when offered real risk results. In a group of cognitively normal research volunteers, 81% said beforehand they would want to know their estimated risk, yet only 60% opted to receive those results when given the chance.
Many who declined cited concerns about emotional distress, the potential burden on family members, and the lack of effective treatments. The study highlights the ethical and psychological complexities involved in returning predictive health information and underlines the importance of offering participants a clear, pressure-free choice about whether to receive such results.
Key Facts:
- Interest versus action: Although 81% of participants expressed hypothetical interest in learning their Alzheimer’s risk, only 60% chose to receive actual results when offered.
- Emotional burden drives decisions: Fear of anxiety, concerns about family impact, and the current absence of approved preventive treatments were common reasons for declining.
- Design implications: The findings support designing research return-of-results programs that respect participants’ autonomy and allow them to decline without pressure.
Source: WUSTL
Context: As research advances our understanding of Alzheimer’s disease, tests that estimate future dementia risk are becoming more common in research settings. Institutions and advisory bodies increasingly recommend offering research participants access to their test results, even when there is no proven medical intervention to change the risk. That trend raises complex ethical questions about whether, and how, to return information that may cause worry but not alter clinical outcomes.
The new observational study from Washington University School of Medicine in St. Louis assessed how cognitively normal volunteers in long-term aging research responded when offered the option to learn individualized estimates of their five-year risk for developing Alzheimer’s disease dementia.
Researchers compared two measures: participants’ previously reported hypothetical interest in learning their risk and their actual decision when test results were returned. The discrepancy was substantial, and the study explored who declined results and why.
Study lead authors emphasize that offering results can be valuable, but it must be done with sensitivity. People facing the prospect of a debilitating and ultimately fatal condition may reasonably choose not to know their risk, and research protocols should honor that preference.
The study appears in JAMA Network Open (May 6, 2025).
“There is growing momentum to give research participants access to their test results, even when medical options are limited,” said Jessica Mozersky, PhD, an assistant professor at WashU’s Bioethics Research Center and an investigator at the Knight Alzheimer Disease Research Center. “Our findings suggest that for sensitive, high-stakes information, people should have the meaningful option to decline.”
National advisory groups have encouraged study designs that offer return of results, and some participant-led proposals advocate for access to biomarker information. At the same time, returning results that indicate high risk for incurable disease raises genuine concerns about causing distress, stigma, or other harms.
To study decisions in a real-world research setting, Mozersky and colleagues analyzed participants from the Memory & Aging Project at the Knight Alzheimer Disease Research Center, an ongoing program that has followed volunteers since 1979. For this analysis, researchers focused on cognitively normal volunteers aged 65 and older who had biomarker data available—genetic testing (APOE), brain imaging (amyloid PET and MRI), or plasma amyloid measurements—from which a five-year risk estimate could be generated.
Although many participants had previously said they would want to know their risk if such information were available, participants originally enrolled in these long-term studies under the expectation that individual risk results would not be returned. For the current project, a subset of 274 participants was offered their individualized research results so investigators could measure uptake and follow-up on reasons for declining.
Before making a decision, each participant received a clear information guide describing how risk estimates are produced and outlining potential benefits and drawbacks. Examples of potential benefits included learning a lower-than-expected risk and becoming eligible for prevention-focused clinical trials if test results suggested higher risk. Potential downsides included increased anxiety and possible complications with some types of insurance.
When asked hypothetically in the larger cohort, 81% said they would choose to learn their risk. In contrast, when actual results were offered to the 274 Memory & Aging Project participants, only 60% elected to receive them, while 40% declined.
The decision to decline was more common among participants who reported a parental history of Alzheimer’s disease and among participants who self-identified as Black. In follow-up interviews, people who declined most often cited reasons such as the possibility that knowing would be emotionally burdensome to themselves or their families, negative personal experiences with Alzheimer’s in relatives, confidence in their current cognitive health, a sense that they were already prepared, and uncertainty about the accuracy of risk predictions.
“The absence of preventive or disease-modifying treatments for Alzheimer’s is a major reason people declined biomarker results,” Mozersky said. “Several interviewees remarked that an effective treatment would likely change their decision.”
Because these biomarker findings were generated in a research setting, investigators did not place them into participants’ medical records. Participants who chose to receive results could, however, share the information with their own clinicians, who might then incorporate it into medical records.
The authors note that more work is needed to understand why uptake differs across demographic groups and to develop return-of-results processes that truly reflect individuals’ informed preferences—especially as returning research results becomes more common even when clinical actions are limited.
Citation: 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 assays used in this study. No individual researcher on this study reported a personal financial interest in C2N Diagnostics.
About this Alzheimer’s disease research news
Author: Jessica Church
Source: WUSTL
Contact: Jessica Church – WUSTL
Image: Image credit: 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
Title: Research participant interest in learning results of biomarker tests for Alzheimer disease
Importance: While existing evidence suggests limited psychosocial harms from returning research results, there are few data on how often participants accept Alzheimer’s disease research results and why some decline.
Objectives: To quantify and qualitatively assess who declines Alzheimer’s disease biomarker results offered in research and which factors are associated with that decision.
Design, Setting, and Participants: This observational cohort study ran from November 1, 2020, to April 15, 2024, and included participants aged 65 or older with unimpaired cognition and available biomarker data (APOE genotype and either imaging [amyloid PET and MRI] or plasma amyloid) enrolled in a longitudinal cognitive aging cohort at the Knight Alzheimer Disease Research Center.
Exposure: Participants who previously had no option to receive research results were offered the choice to learn them.
Main outcome measures: The primary outcome was the participant’s decision to receive Alzheimer’s disease biomarker results. The study examined associations between that decision and demographic factors (self-identified race, parental history of Alzheimer’s, age, sex) and the type of biomarker offered, using χ2 tests and semiparametric log-binomial regression. Semistructured interviews with a subset of decliners explored reasons for declining.
Results: Of 274 participants offered results (mean [SD] age 75.9 [5.8] years; 58% women; 13% Black; 87% White), 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 parental history of Alzheimer’s disease dementia were also more likely to decline (adjusted risk ratio, 1.49; 95% CI, 1.12–1.98).
Qualitative findings: Common reasons for declining included the belief that knowing would be a burden, negative personal or family experiences with Alzheimer’s disease dementia, confidence in current memory function, concerns about family burden, a sense of being already prepared, and uncertainty about predictive accuracy.
Conclusions and relevance: Among participants in a longitudinal aging study offered their research biomarker results, Black participants and those with a parental history of Alzheimer’s disease dementia were significantly more likely to decline. Family experiences and perceptions may shape decisions about learning risk. Additional research is needed to understand racial differences in uptake and to ensure that return-of-results practices reflect individual preferences and values.