Experiences and challenges in disclosing Alzheimer’s disease biomarker results in clinical research and clinical practice

Ryoko Ihara

Department of Neurology, Tokyo Metropolitan Geriatric Hospital

The disclosure of Alzheimer’s disease biomarker results should occur in balance between examinee’s willingness and ethical considerations in clinical research.　In the Japanese Alzheimer’s Disease Neuroimaging Initiative （J-ADNI） conducted from 2008 to 2014, results of cerebrospinal biomarkers and amyloid imaging were disclosed to the participants who wanted to learn them under guidelines and no trouble happened.　The lesson from this unprecedented experience is that participants’ willingness to learn biomarker results is larger than expected by investigators and it is what motivates them to participate in the study.　When disease modifying treatments become available, biomarker tests will be much more widely used in clinical practice.　In order to help examinee’s precise understanding of biomarkers and meanings of those results and address his/her questions and possible mood change, we have to prepare education materials and consultation system.

Address correspondence to Dr. Ryoko Ihara, Department of Neurology, Tokyo Metropolitan Geriatric Hospital （35-2 Sakae-cho, Itabashi-ku, Tokyo 173-0015, Japan）