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Research involving the recently deceased: ethics questions that must be answered
  1. Brendan Parent1,
  2. Olivia S Kates2,
  3. Wadih Arap3,
  4. Arthur Caplan1,
  5. Brian Childs4,
  6. Neal W Dickert5,
  7. Mary Homan6,
  8. Kathy Kinlaw7,
  9. Ayannah Lang8,
  10. Stephen Latham9,
  11. Macey L Levan10,
  12. Robert D Truog11,12,
  13. Adam Webb13,
  14. Paul Root Wolpe7,13,
  15. Rebecca D Pentz14
  1. 1Medical Ethics, New York University School of Medicine, New York, New York, USA
  2. 2Johns Hopkins Medicine, Baltimore, Maryland, USA
  3. 3Rutgers Cancer Institute of New Jersey & Division of Hematology/Oncology, Department of Medicine, Rutgers New Jersey Medical School, Newark, New Jersey, USA
  4. 4Mercer University School of Medicine, Macon, Georgia, USA
  5. 5Department of Medicine, Division of Cardiology, Emory University School of Medicine, Atlanta, Georgia, USA
  6. 6CommonSpirit Health, Chicago, Illinois, USA
  7. 7Center for Ethics, Emory University, Atlanta, Georgia, USA
  8. 8Winship Cancer Institute, Atlanta, Georgia, USA
  9. 9Interdisciplinary Center for Bioethics, Yale University, New Haven, Connecticut, USA
  10. 10NYU Grossman School of Medicine, New York, New York, USA
  11. 11Department of Anesthesiology, Critical Care, and Pain Medicine, Boston Children's Hospital, Boston, Massachusetts, USA
  12. 12Center for Bioethics, Department of Global Health and Social Medicine, Harvard Medical School, Boston, Massachusetts, USA
  13. 13Emory University School of Medicine, Atlanta, Georgia, USA
  14. 14Winship Cancer Institute, Emory University School of Medicine, Atlanta, Georgia, USA
  1. Correspondence to Dr Brendan Parent, Medical Ethics, New York University School of Medicine, New York, NY 10016, USA; brendan.parent{at}nyu.edu

Abstract

Research involving recently deceased humans that are physiologically maintained following declaration of death by neurologic criteria—or ‘research involving the recently deceased’—can fill a translational research gap while reducing harm to animals and living human subjects. It also creates new challenges for honouring the donor’s legacy, respecting the rights of donor loved ones, resource allocation and public health. As this research model gains traction, new empirical ethics questions must be answered to preserve public trust in all forms of tissue donation and in the practice of medicine while respecting the legacy of the deceased and the rights of donor loved ones. This article suggests several topics for immediate investigation to understand the attitudes and experiences of researchers, clinical collaborators, donor loved ones and the public to ensure research involving the recently deceased advances ethically.

  • ethics
  • ethics- research
  • tissue and organ procurement
  • death
  • resource allocation

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Footnotes

  • Twitter @parent_brendan

  • Contributors BP drafted the original article, oversaw all revisions, and serves as guarantor accepting full responsibility for the finished work; OK performed extensive first round of revisions to original draft; WA provided significant edits to article; AC provided significant edits to article; BC provided significant edits to article; NWD provided significant edits to article; MH provided significant edits to article, and helped with significant revisions after first submission; KK provided significant edits to article; AL provided significant edits to article; SL provided significant edits to article; ML provided significant edits to article; RDT provided significant edits to article; AW provided significant edits to article; PW provided significant edits to article; RDP provided significant edits to article, helped with significant revisions after first submission and helped oversee writing working group.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests WA is a founder, equity stockholder, and scientific advisor of PhageNova Bio and of MBrace therapeutics. PhageNova Bio and MBrace Therapeutics partially support his academic laboratory through Sponsored Research Agreements. WA has previously out-licensed intellectual property related to findings potentially discovered and/or validated through translational research involving recently deceased human subjects or terminal-wean patients at the end of life. These relationships are currently managed according to established institutional conflict of interest policies of Rutgers, The State University of New Jersey. BP directs transplant ethics and policy research which is in part supported by a gift from United Therapeutics.

  • Provenance and peer review Not commissioned; externally peer reviewed.