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What's End of Life Got to Do With It? Research Ethics With Populations at Life's End

^a Einstein Center for Urban Health Policy and Research, Thomas Jefferson University/Jefferson Health System, Philadelphia, PA

Correspondence: Etienne J. Phipps, PhD, Albert Einstein Healthcare Network, Center for Urban Health Policy and Research, One Penn Boulevard, Wister 4442, Philadelphia, PA 19144. E-mail: phippst{at}einstein.edu.

Purpose: This study addressed key concerns that gave rise to the question of whether special guidelines were needed to monitor research at the end of life. Design and Methods: Summary of established ethical and legal guidelines that govern the conduct of research with human subjects, with discussion of issues relevant to populations at life's end. Discussion of whether special guidelines are indicated focuses on four questions concerning: (a) time periods; (b) methods and approaches; (c) informed consent; and (d) obligations of researchers. Results: Although research involving patients at end of life does present important ethical and moral challenges to researchers and should be scrutinized carefully by institutional review boards (IRBs), special guidelines are not required. Implications: Closer examination of the dimensions discussed will enhance the research endeavor and model the qualities for which end-of-life research should become known.

Key Words: Institutional review boards • Ethical guidelines • Vulnerable patients

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