title: Ethical conduct of palliative care research: enhancing communication between investigators and institutional review boards.
abstract: Palliative care has faced moral and ethical challenges when conducting research involving human subjects. There are currently no resources to guide institutional review boards (IRBs) in applying standard ethical principles and terms-in a specific way-to palliative care research. Using as a case study a recently completed multisite palliative care clinical trial, this article provides guidance and recommendations for both IRBs and palliative care investigators to facilitate communication and attain the goal of conducting ethical palliative care research and protecting study participants while advancing the science. Beyond identifying current challenges faced by palliative care researchers and IRBs reviewing palliative care research, this article suggests steps that the palliative care research community can take to establish a scientifically sound, stable, productive, and well-functioning relationship between palliative care investigators and the ethical bodies that oversee their work.
authors.affiliation: Duke Clinical Research Institute, Durham, North Carolina, USA; Duke Cancer Institute, Duke University School of Medicine, Durham, North Carolina, USA.
authors.forename: Amy P
authors.initials: AP
authors.lastname: Abernethy
authors.affiliation: University of Colorado School of Medicine, Aurora, Colorado, USA.
authors.forename: Warren H
authors.initials: WH
authors.lastname: Capell
authors.affiliation: Division of Extramural Activities, National Institute of Nursing Research, National Institutes of Health, Bethesda, Maryland, USA.
authors.forename: Noreen M
authors.initials: NM
authors.lastname: Aziz
authors.affiliation: University of California at San Francisco, San Francisco, California, USA.
authors.forename: Christine
authors.initials: C
authors.lastname: Ritchie
authors.affiliation: Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, Ohio, USA.
authors.forename: Maryjo
authors.initials: M
authors.lastname: Prince-Paul
authors.affiliation: University of Colorado School of Medicine, Aurora, Colorado, USA.
authors.forename: Rachael E
authors.initials: RE
authors.lastname: Bennett
authors.affiliation: University of Colorado School of Medicine, Aurora, Colorado, USA. Electronic address: Jean.Kutner@ucdenver.edu.
authors.forename: Jean S
authors.initials: JS
authors.lastname: Kutner
mesh_terms: D002986:Clinical Trials as Topic / Q000941:ethics / Q000379:methods; D003142:Communication; D028744:Ethics Committees, Research; D032984:Ethics, Research; D006801:Humans; D015337:Multicenter Studies as Topic / Q000941:ethics / Q000379:methods; D010166:Palliative Care / Q000941:ethics* / Q000379:methods*; D012108:Research Personnel
keywords: Palliative care; human subjects protection; institutional review boards; research ethics