Summary: Recent research has uncovered a significant disparity between individuals’ stated desire to understand their risk of Alzheimer’s disease and their actions when presented with the actual results. In a study involving cognitively normal participants, only 60% opted to learn their estimated risk, despite 81% previously expressing interest.
Major reasons for choosing not to receive results included fears of anxiety, the burden on family, and the absence of effective treatments. The findings underscore the ethical and psychological challenges associated with sharing predictive health information and highlight the necessity of providing participants with true choices devoid of pressure.
Key Facts:
- Interest vs. Action Gap: Just 60% of participants opted for their Alzheimer’s risk results, even though 81% had previously shown interest.
- Emotional Burden a Key Factor: Common reasons for declining included anxiety concerns and the lack of available treatment options.
- Need for Sensitive Approaches: The findings suggest the necessity of designing studies that respect participants’ rights to decline information about their risks.
As research advances in understanding Alzheimer’s disease, opportunities are increasing for healthy participants to learn their risk of developing Alzheimer’s dementia in the future.
While many organizations advocate for sharing risk estimates with individual participants, ethical dilemmas arise, especially since no medical interventions currently exist to alter that risk.
A study from Washington University School of Medicine in St. Louis investigated how willing healthy volunteers are to learn about their risk of developing Alzheimer’s disease dementia. The results revealed a stark contrast between the percentage of participants expressing interest and those who went ahead to learn their risks when given the chance.
This knowledge could prove beneficial in guiding researchers to create study designs that present the option of receiving results in a way that doesn’t pressure participants into making a particular choice.
The importance of ensuring that participants genuinely wish to receive their results is emphasized, as expressed interest does not always translate into action when faced with the reality of the situation. The study was published on May 6 in JAMA Network Open.
Senior author Jessica Mozersky, PhD, noted, “Generally, there’s a trend towards providing research participants and patients with their test results, even in cases where no action can be taken based on those results. Our findings suggest, however, that in sensitive scenarios—like estimating one’s risk of a serious and life-altering illness—individuals should have the option to remain unaware.”
In recent years, the National Academies of Sciences, Engineering, and Medicine have recommended including the option to return test results to participants in study designs, even if no subsequent action can be taken. Moreover, a committee comprising study participants, care partners, and members of dementia advocacy groups recently proposed a bill of rights for Alzheimer’s research participants to support their access to results.
However, ethical concerns persist, given the potential for anxiety and harm to participants who discover they are at high risk for developing this type of dementia. Unlike preventive methods available for those at high genetic risk for certain cancers, there are currently no approved preventive treatments for Alzheimer’s dementia.
To better understand who chooses to decline these results and why, Mozersky and her team utilized ongoing research at WashU Medicine’s Knight Alzheimer Disease Research Center, which has explored brain function in aging participants since 1979. This project has evolved into multiple extensive studies on Alzheimer’s disease development, including the creation of biomarker tests for risk assessment.
In this study, the focus was on cognitively normal volunteers who underwent several tests, including genetic screening and brain scans, allowing researchers to predict their risk of developing Alzheimer’s dementia over the coming five years. Participants initially joined the long-term study with the understanding that they wouldn’t receive their risk results. Nonetheless, many expressed theoretical interest in learning about their risks over time.
The study involved 274 participants from the Memory & Aging Project, assessing the psychological impact of learning their risks and the factors influencing their decisions. Before making a choice, participants received a guide explaining how risk is estimated along with examples of the pros and cons of learning their results. Knowing their risk might reveal a lower probability than expected but could also lead to anxiety or affect insurance options.
While 81% of participants in the long-term study indicated they would want to know their risks theoretically, only 60% opted to receive their real results when offered. Participants with a family history of Alzheimer’s and those identifying as African American were more likely to decline their results.
Among those who chose not to learn their risks, interviews revealed common concerns, such as the burden of knowledge on themselves or their families, previous negative experiences with Alzheimer’s, a current sense of well-being, and uncertainty about risk predictions.
“The absence of preventive treatments is a significant factor in people choosing not to know their biomarker test results,” Mozersky stated. “When we spoke to participants about their decision not to find out, many mentioned that they might reconsider if an effective treatment became available.”
Even though results from this research are not included in participants’ medical records, they could potentially end up in a patient’s record if disclosed to a healthcare provider.
“We intend to continue examining these complex issues, particularly as it becomes more standard to return results to research participants, even if those results currently can’t be acted upon,” Mozersky concluded.
