Appendix C

Statement of Task

A planning committee of the National Academies of Sciences, Engineering, and Medicine will be appointed to conduct a 1-day workshop to bring together stakeholders to discuss potential ethical issues that may arise from new and emerging trends in biomedical research (including behavioral and social research) and society. The workshop will identify a range of current and emerging bioethical issues—both in basic and in clinical research—and explore a broad range of stakeholder perspectives. Input will be sought from a variety of perspectives, which may include patients/participants/individuals, bioethicists, academic and industry researchers, clinicians, and government representatives. The workshop will describe the state of the emerging science and potential pressing, recurring, emerging, and/or anticipated future bioethical issues in biomedical research and society that fall within the scope of the research and policy activities of the National Institutes of Health. Potential topics may include

• Use of digital technologies, artificial intelligence, and machine learning in biomedical research and clinical care;
• Emerging ethical challenges for sharing data from human research participants and use of human biospecimens;
• Health equity and health disparities in research, including
  • Recognizing and addressing barriers to participation in research and clinical care across diverse populations and groups,
  • Understanding the impact of cultural and social context on health and disease, and
  • Equitable distribution of the benefits and burdens of research;

• Innovative study designs, including crowdsourcing of research and citizen science;
• Novel approaches for enhancing bioethics infrastructure and training;
• New means for assessing and enhancing scientific workforce diversity; and/or
• Innovative solutions for enhancing research oversight infrastructure.

Given the broad scope of bioethical issues in research and the difficulty in addressing all possible issues in a single workshop, the following topics fall outside the scope of this workshop as they are being addressed in multiple other venues: gene editing, gene drives, human–animal chimera research, human fetal tissue research, neuroethics, and animal care and welfare. The planning committee will develop the agenda for the workshop, select and invite speakers and discussants, and moderate or identify moderators for the discussions. A workshop proceedings will be prepared by a designated rapporteur based on the information gathered and discussions held during the workshop in accordance with National Academies institutional policies and procedures.