Bridging minds: Participant perspectives on postmortem brain research and engagement.

Abstract

Postmortem research participation remains underrepresented in research ethics discussions. Herein, we examined the associated perspectives of individuals preregistered with the Brain Bank for Aging Research at the Tokyo Metropolitan Institute of Gerontology. We conducted a postal survey targeting 88 preregistrants, yielding 52 responses (response rate: 59.1%, average respondent age: 79.5 years, range: 49-97). The questionnaire gathered information on the reasons for agreeing to participate, helpful information provided during the explanation, and expectations regarding future information. The stated reasons for participating included a desire to contribute to science, gratitude for medical care received, memories of relatives' past donations, and inspiration from staff enthusiasm and materials. Beneficial information was given in brochures, coordinator explanations, and lectures; however, guidance for family members regarding postmortem procedures and updates on recent activities and research outcomes were highlighted as areas requiring future improvement. Willingness to participate in brain banks was influenced by altruistic factors, personal medical experiences, and the influence of statements from close contacts. Registrants maintained their interest after registration and prepare for future arrangements. Family cooperation was identified as a critical factor influencing the fulfillment of participant intentions, emphasizing the need for accessible and low-burden family guidance. Registrants generally seek information to help family members and associates avoid difficulties related to their participation. Brain banks should continue conducting such surveys for registrants and reflect the findings in their information dissemination and educational programs. This approach will help improve the understanding and support for brain bank participation, ultimately contributing to the advancement of medical research and ethics in postmortem studies.