As scientific tools to predict the risk of Alzheimer’s disease improve, researchers face a difficult question: Should healthy people be told if they’re likely to develop Alzheimer’s, even when there are no proven ways to prevent it?
A new study from Washington University School of Medicine in St. Louis, published in JAMA Network Open, reveals a key insight: while most research volunteers say they want to know their Alzheimer’s risk, far fewer actually choose to learn their results when given the real opportunity.
The study examined the emotional and ethical side of Alzheimer’s risk disclosure, especially for healthy adults who participate in research and have no symptoms of cognitive decline. It also raises important questions for future clinical practices as Alzheimer’s screening becomes more common—especially with new preventive treatments on the horizon.
The Research
The study involved 274 cognitively healthy adults enrolled in the long-running Memory & Aging Project at WashU’s Knight Alzheimer Disease Research Center. These participants had undergone genetic testing, blood work, and brain scans to estimate their likelihood of developing Alzheimer’s disease dementia in the next five years.
Although they initially joined the project with the understanding that they would not receive their personal test results, many expressed theoretical interest in knowing their risk over time. So, researchers offered a subset of participants the option to receive their actual risk scores, along with clear information about the pros and cons of doing so.
- When asked hypothetically, 81% of people said they would want to know their Alzheimer’s risk.
- But when the chance became real, only 60% chose to learn their results.
Those who declined were later interviewed, and their reasons reflected a range of concerns. Some feared the emotional burden it might place on themselves or their families.
Others were already mentally prepared for the disease, didn’t see the point without treatment options, or felt confident about their memory health. Some simply did not want the uncertainty of a prediction that might not be accurate.
Interestingly, people with a family history of Alzheimer’s and those who identified as African American were more likely to decline the offer to know their risk. Researchers say this highlights the complex, deeply personal nature of the decision—and the need for more thoughtful approaches to how results are offered.
Ethical and Emotional Considerations
Lead author Dr. Jessica Mozersky, an expert in bioethics at WashU Medicine, emphasized the importance of letting people choose whether or not they want to know.
“There’s growing support for returning results to research participants—even when nothing can be done with the information,” she said. “But our findings show that in sensitive cases like Alzheimer’s risk, people should also have the clear option not to know.”
Currently, unlike high-risk cancer gene results (like BRCA), there are no medical treatments proven to prevent or delay Alzheimer’s. This makes the ethical dilemma even more complicated. Knowing you are at high risk might make you eligible for future clinical trials—but it could also cause anxiety or impact your ability to obtain certain types of insurance.
That’s why the research team created informational guides to help participants weigh their choices. These included pros (such as qualifying for studies or peace of mind) and cons (like emotional distress or uncertainty about prediction accuracy). Even with this support, many still decided not to know.
What This Means for the Future
With new blood tests and brain imaging tools becoming more advanced, screening for Alzheimer’s risk is likely to become more common, especially if future preventive treatments are approved. That makes it even more important to understand how people make decisions about their own health information—and how researchers and clinicians can support them.
“The decision to know or not know your Alzheimer’s risk is deeply personal,” said Mozersky. “As we move into an era of preventive Alzheimer’s therapies, we must ensure that the process of offering results is respectful, well-informed, and never pressured.”
Ultimately, this study highlights that hypothetical interest doesn’t always translate into action. Many people want to believe they’d want to know their risk—but when faced with the reality, they may decide otherwise. And that, researchers say, is okay. The key is giving people the choice—and the tools—to decide what’s right for them.
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The research findings can be found in JAMA Network Open.
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