Emotional and ethical factors influence a person’s decision to know Alzheimer’s risk

As researchers make progress in understanding how Alzheimer’s disease develops, there are growing opportunities for healthy research participants to learn their risk to develop Alzheimer’s dementia in the future. Although many organizations often argue for researchers to share risk estimates with individual participants, there are ethical concerns to do this, since there are no medical interventions to change that risk.

A new study of the Washington University School of Medicine in St. Louis investigates the choices that such healthy research makes volunteers when they get the chance to learn their risk to develop the dementia of Alzheimer’s disease. The researchers found a great discrepancy between the percentage of participants who said they would like to learn their risk if such estimates would become available and the percentage that followed to learn those results when the real chance had.

The knowledge can help researchers design studies that offer the opportunity to receive results in ways that participants do not put pressure on to make one choice above the other. The study also emphasizes the importance of ensuring that participants really want their research results, because hypothetical interest does not necessarily translate into wanting to learn a person’s risk of Alzheimer’s disease when it is actually offered.

The study will be published on 6 May in Jama Network Open.

“In general, there is a movement to give research participants and patients their test results, even in situations where nothing can be done with those results,” said senior author Jessica Mozersky, PhD, a university teacher of medicine at the Bioethics Research Center and a researcher at the Charles F. and Joanne Knight Mesheimer. “But our study suggests that in sensitive cases – such as when estimating the risk of developing a debilitating and deadly disease – people must have the option not to know.”

In recent years, the National Academies of Sciences, Engineering and Medicine have recommended that research study designs generally include the option to return test results to participants, even when such results cannot be acted. Similarly, a committee of participants in the study, their care partners and members of the Dementia Interests Organizations recently presented a Bill of Rights for participants in Alzheimer’s disease who argue for accessing such results.

At the same time, ethical concerns continue to exist because of the possibility of causing anxiety and other damage to participants who learn that they are at a great risk of developing a debilitating and incurable dementia. In contrast to preventive options for people who learn that they run a high genetic risk on certain cancers, there are currently no approved preventive treatments or medical interventions available to avert the dementia of Alzheimer’s disease.

To get a clearer picture of whom the risk results of Alzheimer’s disease decreases and why, Mozersky and her colleagues turn to long -term research in the research center of Washu Medicine’s Knight Alzheimer Disease. Since 1979, the memory and aging project has delivered a framework to study the brain function in participants as they get older. In the course of the decades, the project has evolved and extended to various long-term studies into the development and progression of Alzheimer’s disease, including the development of Biomarker tests to determine the risk.

For the current study, the Mozersky team concentrated on cognitively normal volunteers who underwent a series of tests, including genetic tests, blood collection and brain scans, from which researchers could estimate the chance of developing Alzheimer’s disease in the next five years. Participants originally came to the long -term examination that they would not have the option to receive their own risk results. Still, Mozersky said, over the years many have shown a theoretical interest in learning their results. The study, together with Sarah M. Hartz, MD, PhD, a professor in psychiatry at Washu Medicine, offered results to a subset of participants in the memory and aging project – 274 participants – to assess the psychological impact of learning their risk and the factors that they consider when making that decision.

Before the participants received an information guide explaining how the risk is estimated and some examples of advantages and disadvantages of learning their results. On the pro side, for example, some people can learn that their risk is lower than they might have expected. And if the test results of the Biomarker suggest that a participant runs a high risk of developing Alzheimer’s dementia over the next five years, they can be eligible to participate in clinical investigations into strategies for research prevention. On the other hand, knowledge of high risk can cause anxiety or complicating the purchase of some types of insurance.

When the results were theoretical, 81% of the people in the larger, long -term examination said they would choose to know. When the real results, on the other hand, were offered to the 274 participants in the memory and aging project, only 60% chose to receive them. Participants with a parental history of Alzheimer’s disease and participants who identified themselves as Afro-American were more often than others to refuse the results.

A sample of participants who refused to learn that their results were interviewed afterwards, and the most common reasons would include a burden for themselves or their family members, their own negative experiences and perceptions of Alzheimer’s disease, that they feel good about their memory, that they are still prepared for the disease in the disease.

“The lack of preventive treatments is also a major factor in refusing the results of Biomarker tests in people without symptoms of dementia of Alzheimer’s disease,” said Mozersky. “When we did interviews with some participants to better understand their choice not to know, many said that a new effective treatment of thoughts could change if it would become available.”

Because the results are only available through research studies, they are not added to the participant’s medical file by the researchers. However, such results can end in a patient’s medical file if a participant shares them with his doctor.

“We plan to continue our research into the complexity of these questions, especially because recurring results for research participants occur more often, even if those results cannot be acted yet,” said Mozersky.