A leading group of Alzheimer’s researchers contends that, as biomarkers to detect signals of the disease improve at providing clinically meaningful information, researchers will need guidance on how to constructively disclose test results and track how disclosure impacts both patients and the data collected in research studies. A survey conducted by a group including experts from the Perelman School of Medicine at the University of Pennsylvania found that a majority of Alzheimer’s researchers supported disclosure of results to study participants. The study is published online in Neurology.
“While this is not a call to immediately tell subjects their biomarker results, it does show that the field is moving to a point where experts want to share valid and meaningful results with participants,” said co-senior author Jason Karlawish, MD, professor of Medicine and Medical Ethics and Health Policy and Associate Director of the Penn Memory Center. “As we gain more data on the predictive abilities of these measurements, we will need models and methods to effectively reveal results.”
Alan J. Lerner, MD’s editorial, Amyloid imaging – the court of public opinion, in the same issue of Neurology, stated that “human amyloid imaging is one of the great recent
translational medicine stories.” Lerner found that important issues were raised by the study’s findings.
“Revision of research disclosure policies in an age of expanded information access has to be considered, but should be weighed against protecting participants from harm from worrisome but incomplete prognostic information,” Lerner wrote. “Lay people often do not understand the meaning or context of disclosed information, so simple disclosure of data needs to be fashioned into usable information. Disclosing results of amyloid imaging may require skills that current clinicians lack, ” he continued.