@article{10db1f0e49c34518ad6c5e765537e84d,
title = "A Participant-Centered Approach to Understanding Risks and Benefits of Participation in Research Informed by the Kidney Precision Medicine Project",
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.",
keywords = "Altruism, The Kidney Precision Medicine Project, autonomy, community engagement, human subjects, informed consent, institutional review boards, kidney biopsy, non-maleficence, precision medicine, research ethics, research participation, research risks and benefits, safety monitoring",
author = "{Kidney Precision Medicine Project} and Butler, {Catherine R.} and Appelbaum, {Paul S.} and Heather Ascani and Mark Aulisio and Campbell, {Catherine E.} and {de Boer}, {Ian H.} and Dighe, {Ashveena L.} and Hall, {Daniel E.} and Jonathan Himmelfarb and Richard Knight and Karla Mehl and Raghavan Murugan and Rosas, {Sylvia E.} and Sedor, {John R.} and O'Toole, {John F.} and Tuttle, {Katherine R.} and Waikar, {Sushrut S.} and Michael Freeman and Theodore Alexandrov and Alpers, {Charles E.} and Anderton, {Christopher R.} and Joseph Ardayfio and Tanima Arora and El-Achkar, {Tarek M.} and Azeloglu, {Evren U.} and Olivia Balderes and Balis, {Ulysses G.J.} and Shweta Bansal and Barasch, {Jonathan M.} and Daria Barwinska and Jack Bebiak and Blanc, {Victoria M.} and Blank, {Kristina N.} and Bomback, {Andrew S.} and Brown, {Keith D.} and Bush, {William S.} and Taneisha Campbell and Canetta, {Pietro A.} and Jonas Carson and Leslie Cooperman and Crawford, {Dana C.} and D'Agati, {Vivette D.} and Dagher, {Pierre C.} and Stephen Daniel and Frederick Dowd and Dunn, {Kenneth W.} and Eadon, {Michael T.} and Sean Eddy and Elder, {Michele M.} and Ferkowicz, {Michael J.} and Gaut, {Joe P.} and Yury Goltsev and Agustin Gonzalez-Vicente and Nir Hacohen and Jens Hansen and Lynda Hayashi and Oliver He and Cijang He and Hedayati, {S. Susan} and Leal Herlitz and Hodgin, {Jeffrey B.} and Hoofnagle, {Andrew N.} and Hoover, {Paul J.} and Ravi Iyengar and Sanjay Jain and Nichole Jefferson and Stacey Jolly and Kellum, {John A.} and Kelly, {Katherine J.} and Asra Kermani and Krzysztof Kiryluk and Robert Koewler and Matthias Kretzler and Lake, {Blue B.} and Laszik, {Zoltan G.} and Lecker, {Stewart H.} and Lee, {Simon C.} and Chrysta Lienczewski and Lu, {Christopher Y.} and Mariani, {Laura H.} and McClelland, {Robyn L.} and McMahon, {Gearoid M.} and Steven Menez and Rajasree Menon and Tyler Miller and Moe, {Orson W.} and Dennis Moledina and Mooney, {Sean D.} and Jane Nguyen and Garry Nolan and George Oliver and Edgar Otto and Palevsky, {Paul M.} and Ellen Palmer and Annapurna Pamreddy and Parikh, {Chirag R.} and Samir Parikh and Christopher Park and Harold Park and Ljiljana Pasa-Tolic and Roy Pinkeney and Emilio Poggio and Parmjeet Randhawa and Helmut Rennke and Roberts, {Glenda V.} and Avi Rosenberg and Matthew Rosengart and Brad Rovin and Neil Roy and Kamalanathan Sambandam and Minnie Sarwal and John Saul and Jennifer Schaub and Rachel Sealfon and Ning Shang and Stuart Shankland and Kumar Sharma and Anna Shpigel and Tara Sigdel and Becky Steck and Isaac Stillman and Stutzke, {Edith Christine} and Sutton, {Timothy A.} and Jose Torrealba and Toto, {Robert D.} and Olga Troyanskaya and Mitchell Tublin and Ugochukwu Ugwuowo and Miguel Vazquez and Dusan Velickovic and Manjeri Venkatachalam and Anitha Vijayan and Corona-Villalobos, {Celia P.} and Nancy Wang and Astrid Weins and Adam Wilcox and Kayleen Williams and Mark Williams and Wilson, {Francis P.} and Seth Winfree and Yuguang Xiong and Kun Zhang and Guanshi Zhang",
note = "Publisher Copyright: {\textcopyright} 2021 The Authors",
year = "2022",
month = jul,
doi = "10.1053/j.ajkd.2021.10.006",
language = "English",
volume = "80",
pages = "132--138",
journal = "American Journal of Kidney Diseases",
issn = "0272-6386",
number = "1",
}