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A Participant-Centered Approach to Understanding Risks and Benefits of Participation in Research Informed by the Kidney Precision Medicine Project

Authors :
Catherine R. Butler
Paul S. Appelbaum
Heather Ascani
Mark Aulisio
Catherine E. Campbell
Ian H. de Boer
Ashveena L. Dighe
Daniel E. Hall
Jonathan Himmelfarb
Richard Knight
Karla Mehl
Raghavan Murugan
Sylvia E. Rosas
John R. Sedor
John F. O’Toole
Katherine R. Tuttle
Sushrut S. Waikar
Michael Freeman
Theodore Alexandrov
Charles E. Alpers
Christopher R. Anderton
Joseph Ardayfio
Tanima Arora
Tarek M. El-Achkar
Evren U. Azeloglu
Olivia Balderes
Ulysses G.J. Balis
Shweta Bansal
Jonathan M. Barasch
Daria Barwinska
Jack Bebiak
Victoria M. Blanc
Kristina N. Blank
Andrew S. Bomback
Keith D. Brown
William S. Bush
Taneisha Campbell
Pietro A. Canetta
Jonas Carson
Leslie Cooperman
Dana C. Crawford
Vivette D. D’Agati
Pierre C. Dagher
Stephen Daniel
Frederick Dowd
Kenneth W. Dunn
Michael T. Eadon
Sean Eddy
Michele M. Elder
Michael J. Ferkowicz
Joe P. Gaut
Yury Goltsev
Agustin Gonzalez-Vicente
Nir Hacohen
Jens Hansen
Lynda Hayashi
Oliver He
Cijang He
S. Susan Hedayati
Leal Herlitz
Jeffrey B. Hodgin
Andrew N. Hoofnagle
Paul J. Hoover
Ravi Iyengar
Sanjay Jain
Nichole Jefferson
Stacey Jolly
John A. Kellum
Katherine J. Kelly
Asra Kermani
Krzysztof Kiryluk
Robert Koewler
Matthias Kretzler
Blue B. Lake
Zoltan G. Laszik
Stewart H. Lecker
Simon C. Lee
Chrysta Lienczewski
Christopher Y. Lu
Laura H. Mariani
Robyn L. McClelland
Gearoid M. McMahon
Steven Menez
Rajasree Menon
Tyler Miller
Orson W. Moe
Dennis Moledina
Sean D. Mooney
Jane Nguyen
Garry Nolan
George Oliver
Edgar Otto
Paul M. Palevsky
Ellen Palmer
Annapurna Pamreddy
Chirag R. Parikh
Samir Parikh
Christopher Park
Harold Park
Ljiljana Pasa-Tolic
Roy Pinkeney
Emilio Poggio
Parmjeet Randhawa
Helmut Rennke
Glenda V. Roberts
Avi Rosenberg
Matthew Rosengart
Brad Rovin
Neil Roy
Kamalanathan Sambandam
Minnie Sarwal
John Saul
Jennifer Schaub
Rachel Sealfon
Ning Shang
Stuart Shankland
Kumar Sharma
Anna Shpigel
Tara Sigdel
Becky Steck
Isaac Stillman
Edith Christine Stutzke
Timothy A. Sutton
Jose Torrealba
Robert D. Toto
Olga Troyanskaya
Mitchell Tublin
Ugochukwu Ugwuowo
Miguel Vazquez
Dusan Velickovic
Manjeri Venkatachalam
Anitha Vijayan
Celia P. Corona-Villalobos
Nancy Wang
Astrid Weins
Adam Wilcox
Kayleen Williams
Mark Williams
Francis P. Wilson
Seth Winfree
Yuguang Xiong
Kun Zhang
Guanshi Zhang
Source :
Am J Kidney Dis
Publication Year :
2021

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.

Details

Language :
English
Database :
OpenAIRE
Journal :
Am J Kidney Dis
Accession number :
edsair.doi.dedup.....52892756ee27b70ba2dcb09c147e46b0