Planning for future research participation: Ethical and practical considerations

This paper addresses the concept of advance planning for future research participation during episodic or permanent decisional incapacity. First, the concept and its historical origins are described. Second, the concept's ethical justifications are presented. Third, commentary raising ethical and practical concerns about advance research planning is discussed. The paper concludes with the author's views on advance research planning and on the relevant recommendations of the National Bioethics Advisory Commission.