Alzheimer's Risk and the Dilemma of Knowledge: Why Fewer People Choose to Know Their Actual Risk

As advancements in understanding Alzheimer's disease grow, opportunities arise for healthy individuals to learn their potential risk of developing the condition in the future. While many advocate for sharing such risk assessments with participants to foster transparency, ethical concerns remain since there are currently no effective medical interventions to alter that risk. A recent study conducted by Washington University School of Medicine in St. Louis explored how healthy research volunteers respond when given the chance to discover their personal risk for Alzheimer’s dementia.

Published in JAMA Network Open, the research revealed a significant gap between the number of participants who expressed a desire to learn their risk hypothetically and those who actually chose to receive their results when offered. This discrepancy underscores the complexity of disclosing sensitive health information, particularly when no preventive treatments are available.

The study provides valuable insights for designing research protocols that respect participants’ preferences and mental well-being. It emphasizes the importance of ensuring that individuals truly wish to receive their results, as interest in hypothetical scenarios often does not translate into actual decisions when faced with real options. Senior author Jessica Mozersky highlighted that people should have the choice to opt-out of learning about their risk of debilitating and incurable diseases like Alzheimer’s.

Ethical guidelines from organizations like the National Academies recommend returning research results even when no action can be taken. However, concerns about causing anxiety or distress—especially given the current lack of preventive treatments—make this a delicate issue. Many participants who declined to learn their risk cited reasons such as the potential emotional burden, current good memory performance, or feeling prepared for the disease.

The study utilized data from the long-standing Memory & Aging Project, which has monitored brain function in aging individuals since 1979. Participants underwent various tests, including genetic analyses and brain scans, to estimate their five-year risk of developing Alzheimer’s dementia. Even though these participants were initially told they wouldn’t receive individual risk results, many expressed interest in learning their status.

A subset of 274 participants was offered their results, and researchers examined their psychological responses and reasons for acceptance or decline. Factors influencing the decision included familial history and race, with African American participants and those with a family history more likely to decline. Common reasons for declining involved fear of anxiety, negative perceptions of Alzheimer’s, current memory confidence, and perceptions of the uncertainty in risk prediction.

Interviews with those who refused to learn their results indicated that many considered a potential future treatment effective enough to reconsider their decision. The findings suggest that respecting individuals’ autonomy and psychological safety is crucial when sharing sensitive health predictions.

The ongoing research aims to better understand the psychology behind decisions to learn or decline risk information. As the practice of returning results becomes more common, further studies will explore how to balance ethical considerations with the benefits of transparency, especially in diseases lacking current preventive options.