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A Participant-Centered Approach to Understanding Risks and Benefits of Participation in Research Informed by the Kidney Precision Medicine Project.
Butler, Catherine R; Appelbaum, Paul S; Ascani, Heather; Aulisio, Mark; Campbell, Catherine E; de Boer, Ian H; Dighe, Ashveena L; Hall, Daniel E; Himmelfarb, Jonathan; Knight, Richard; Mehl, Karla; Murugan, Raghavan; Rosas, Sylvia E; Sedor, John R; O'Toole, John F; Tuttle, Katherine R; Waikar, Sushrut S; Freeman, Michael.
Affiliation
  • Butler CR; Division of Nephrology, Department of Medicine and the Kidney Research Institute, University of Washington, Seattle, Washington; Seattle-Denver Health Services Research and Development Center of Innovation, Veterans Affairs Puget Sound Health Care System, Seattle, Washington. Electronic address: cat
  • Appelbaum PS; Department of Psychiatry, Vagelos College of Physicians & Surgeons, Columbia University, New York, New York; New York State Psychiatric Institute, New York, New York.
  • Ascani H; Division of Nephrology, Department of Internal Medicine, University of Michigan, Ann Arbor, Michigan.
  • Aulisio M; Department of Bioethics, School of Medicine, Case Western Reserve University, Cleveland, Ohio; Center for Biomedical Ethics, MetroHealth System, Cleveland, Ohio.
  • Campbell CE; Kidney Precision Medicine Project Patient Partner, American Association of Kidney Patients, Tampa, Florida; Sigma Theta Tau International Honor Society, Case Management Society of America, AARP Volunteer Nursing Leadership Board.
  • de Boer IH; Division of Nephrology, Department of Medicine and the Kidney Research Institute, University of Washington, Seattle, Washington.
  • Dighe AL; Division of Nephrology, Department of Medicine and the Kidney Research Institute, University of Washington, Seattle, Washington.
  • Hall DE; Department of Surgery, School of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania; Department of Anesthesiology and Perioperative Medicine, School of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania; Wolff Center at UPMC, Pittsburgh, Pennsylvania; Center for Health Equity Res
  • Himmelfarb J; Division of Nephrology, Department of Medicine and the Kidney Research Institute, University of Washington, Seattle, Washington.
  • Knight R; Kidney Precision Medicine Project Patient Partner, American Association of Kidney Patients, Tampa, Florida; American Association of Kidney Patients, Pittsburgh, Pennsylvania.
  • Mehl K; Division of Nephrology, Irving Medical Center, Columbia University, New York, New York.
  • Murugan R; Center for Critical Care Nephrology, Department of Critical Care Medicine, School of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania.
  • Rosas SE; Kidney and Hypertension Unit, Joslin Diabetes Center, Harvard Medical School, Boston, Massachusetts.
  • Sedor JR; Cleveland Clinic Lerner College of Medicine, Case Western Reserve University, Cleveland, Ohio; Department of Nephrology and Hypertension, Glickman Urological and Kidney and Lerner Research Institutes, Cleveland Clinic Foundation, Cleveland, Ohio.
  • O'Toole JF; Cleveland Clinic Lerner College of Medicine, Case Western Reserve University, Cleveland, Ohio; Department of Nephrology and Hypertension, Glickman Urological and Kidney and Lerner Research Institutes, Cleveland Clinic Foundation, Cleveland, Ohio.
  • Tuttle KR; Division of Nephrology, Department of Medicine and the Kidney Research Institute, University of Washington, Seattle, Washington.
  • Waikar SS; Section of Nephrology, Boston University School of Medicine and Boston Medical Center, Boston, Massachusetts; Renal Division, Brigham & Women's Hospital, Boston, Massachusetts.
  • Freeman M; Division of Pediatric Nephrology and Hypertension, Department of Pediatrics and Humanities, Penn State College of Medicine, Hershey, Pennsylvania.
Am J Kidney Dis ; 80(1): 132-138, 2022 07.
Article in En | MEDLINE | ID: mdl-34871700
ABSTRACT
An understanding of the ethical underpinnings of human subjects research that involves some risk to participants without anticipated direct clinical benefit-such as the kidney biopsy procedure as part of the Kidney Precision Medicine Project (KPMP)-requires a critical examination of the risks as well as the diverse set of countervailing potential benefits to participants. This kind of deliberation has been foundational to the development and conduct of the KPMP. Herein, we use illustrative features of this research paradigm to develop a more comprehensive conceptualization of the types of benefits that may be important to research participants, including respecting pluralistic values, supporting the opportunity to act altruistically, and enhancing benefits to a participant's community. This approach may serve as a model to help researchers, ethicists, and regulators to identify opportunities to better respect and support participants in future research that entails some risk to these participants as well as to improve the quality of research for people with kidney disease.
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Full text: 1 Database: MEDLINE Main subject: Research Personnel / Precision Medicine Type of study: Etiology_studies / Prognostic_studies / Risk_factors_studies Limits: Humans Language: En Journal: Am J Kidney Dis Year: 2022 Type: Article
Fulltext
Add to My VHL
Print
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Full text: 1 Database: MEDLINE Main subject: Research Personnel / Precision Medicine Type of study: Etiology_studies / Prognostic_studies / Risk_factors_studies Limits: Humans Language: En Journal: Am J Kidney Dis Year: 2022 Type: Article