Researchers study the thinking process behind revealing test results for Alzheimer’s disease

Who would you tell if your Alzheimer’s disease biomarker was positive? Why?

Emily Largent, Ph.D., JD, and RN, researchers at the Penn Program on Precision Medicine for the Brain (P3MB), are individuals in choosing who, why, and how to share information about Alzheimer’s disease. We conducted two qualitative studies to understand the decision-making process of. disease Biomarker and genetic test results. The study, entitled “It’s Horrible,” is entitled “The Ethical, Legal, and Social Challenges of Sharing Alzheimer’s Disease Biomarkers and Genetic Testing Results with Others.” Journal of Law and the Bioscience May 19th.

The study was conducted in collaboration with three other researchers in the Pen Program for Precision Medicine in the Brain (P3MB). Christine Harkins, MPH; and Jason Carlawish, MD.

Data were collected from interviews with participants enrolled in the Study of Knowledge and Responses to the Amyloid Test (SOKRATES I) and the Study of Knowledge and Responses to the APOE Test (SOKRATES II). The subjects of these studies are called “people without cognitive impairment” rather than dementia. But they learned more about the risk of Alzheimer’s disease. Specifically, SOKRATES I individuals learn whether they have cerebral amyloid, a biomarker or biological indicator of Alzheimer’s disease pathology, and SOKRATES II individuals have genes that increase their risk of Alzheimer’s disease. I learned if I have it.

“We were very impressed when we started analyzing the interview records. Both genetic and biomarker information conveys something important about the individual’s risk of developing dementia due to Alzheimer’s disease. “Masu,” said Dr. Largent. “People are very interesting social, Legal challenge It comes from learning this information about yourself and sharing it with others. ”

Researchers have found that all participants have revealed their test results to at least one other person. For those who know they are at high risk of developing dementia, the reason for sharing this information is often Support of the heart It helps you process information and plan for the future.

“Perhaps they may share with someone who is willing to serve as their surrogate decision maker in the future, or if they develop dementia and want to be better prepared. , Their loved ones may become their caregivers, “said Dr. Lagent.

Researchers have decided whether many will share their results with others among participants who carry genes or biomarkers that increase the risk of dementia caused by Alzheimer’s disease. He pointed out that he felt emotional weight.

“It took more emotional energy to make this kind of decision than when I first participated in the study,” said one participant. “How much energy and spiritual energy was in the process.” Needs energy […] Whether unintended consequences can occur […] It required far more emotional energy than I had imagined. ”

One of the more interesting parts of the results was about why individuals choose not to share information about the results of their genes or biomarkers with certain people.

“They often choose not to share because they are worried about experiencing prejudice and prejudice,” said Dr. Largent. “I’m worried that my friends and family will treat me differently. I was also worried about discrimination at work, at home, and when buying insurance.” The title of the treatise, “It’s scary,” is shared. It was given by a participant who expected it to lead to discrimination.

Dr. Ragent believes that the dementia caused by Alzheimer’s disease is so condemned that participants’ attention to sharing is justified in these situations. Previous studies by P3MB researchers have also shown that positive biomarkers of the disease cause a negative reaction among the general public.

Researchers cited Yale New Haven Hospital’s adoption of the Late Career Practitioner Policy as an example of discrimination against older people. Under this policy, all clinicians over the age of 70 had to undergo a neuropsychological examination. This said that more than 12% of clinicians had cognitive problems that could affect their ability to practice medicine. The Equal Employment Opportunity Commission sued hospitals for age- and disability-based discrimination last year, a situation that is an example of prejudice surrounding older people’s cognitive abilities, even in the absence of cognitive symptoms.

“Our study highlights the insidiousness of Alzheimer’s disease prejudice and how people choose not to share it because of concerns about social implications,” said Dr. Largent. “We have made all these scientific advances, but the legal protection for patients who have been informed about the risk of dementia has not caught up with science. Our data show a legal gap. It’s a way to emphasize. “

A previous study at the University of California, Los Angeles in 2018 stated that approximately 46.7 million Americans had preclinical Alzheimer’s disease.

“If people want to share, it’s important to put in place appropriate protection so that they don’t face negative effects,” said Dr. Rgent. “This is especially true if there is a disease-modifying therapy for Alzheimer’s disease. It’s becoming more important, and tests to find out who is at risk of cognitive decline or who should receive a prescription will become more prevalent, but now is the time to take action. ”