If you tested positive for a biomarker of Alzheimer’s disease, whom would you tell? Why?
Penn Program on Precision Medicine for the Brain (P3MB) researcher Emily Largent conducted two qualitative studies to understand individuals’ decision-making process as they choose whom, why and how to share information regarding their Alzheimer’s disease biomarker and genetic testing results. The study, “‘That would be dreadful’: The ethical, legal, and social challenges of sharing your Alzheimer’s disease biomarker and genetic testing results with others,” was published in the Journal of Law and the Biosciences.
The studies were done in collaboration with three other researchers from P3MB: Shana Stites, Kristin Harkins, and Jason Karlawish.
The data was collected from interviews with participants enrolled in the Study of Knowledge and Reactions to Amyloid Testing (SOKRATES I) and the Study of Knowledge and Reactions to APOE Testing (SOKRATES II). The individuals in these studies do not have dementia and are termed “cognitively unimpaired.” However, they learned details about their risk for Alzheimer’s disease. Specifically, individuals in SOKRATES I learned if they have brain amyloid, a biomarker or biological indicator of Alzheimer’s disease pathology, and individuals in SOKRATES II learned if they have genes that put them at increased risk for Alzheimer’s disease.
“As we started analyzing the interview transcripts, we were quite moved. Both of these pieces of information—genes and biomarkers—convey something important about the individual’s risk of developing dementia caused by Alzheimer’s disease,” Largent says. “People put their fingers on very interesting social and legal challenges that arise from learning this information about yourself and then sharing it with others.”
The researchers found that every participant revealed their testing results to at least one other person. For those who learned they were at increased risk of developing dementia, the reason for sharing this information is often to gain emotional support as they process the information or to help them plan for their future.
“Maybe they share with someone who they hope will be willing to serve as their surrogate decision maker in the future, or maybe their loved ones will become a caregiver for them, if they go on to develop dementia, and they want to better prepare them,” Largent says.
This story is by Varshini Chellapilla. Read more at the Penn Memory Center.