A Scientific Retreat to Address Ethical Challenges in Data and Sample Sharing to Advance Neurodegenerative Research

Project Summary New and emerging policies, including the NIH Data Management & Sharing Policy (NIH DMS), establish expectations that investigators share or make available data or study samples. Investigators understand and support the value of data sharing in advancing significant findings and therapeutic goals.1 Yet, investigators and participants report ethical concerns associated with data and sample sharing practices in neurodegenerative research. Investigators currently lack guidance on emerging ethical challenges inherent to data and sample sharing. The lack of guidance and need for “best practice” standards call for innovative approaches. The objective of the proposed Conference Grant is to support a one and a half-day retreat aimed at generating solutions to ethical challenges that could be barriers to data and sample sharing practices within neurodegenerative disease research. Interdisciplinary experts, with diverse professional backgrounds, will gather annually. Each year, the organizing committee will identify an ethical issue that will be the focus of the retreat for that year. We will then identify speakers and attendees who are positioned to make meaningful contributions aimed at generating solutions. The retreat will consist of a combination of presentations aimed at exploring the state-of-the-science regarding the focused topic and moderated and structured discussions. The aim of the yearly retreat will be to generate scalable and implementable solutions that will advance ethical data and sample sharing practices.