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

dc.contributor.authorButler, Catherine R.
dc.contributor.authorAppelbaum, Paul S.
dc.contributor.authorAscani, Heather
dc.contributor.authorAulisio, Mark
dc.contributor.authorCampbell, Catherine E.
dc.contributor.authorde Boer, Ian H.
dc.contributor.authorDighe, Ashveena L.
dc.contributor.authorHall, Daniel E.
dc.contributor.authorHimmelfarb, Jonathan
dc.contributor.authorKnight, Richard
dc.contributor.authorMehl, Karla
dc.contributor.authorMurugan, Raghavan
dc.contributor.authorRosas, Sylvia E.
dc.contributor.authorSedor, John R.
dc.contributor.authorO'Toole, John F.
dc.contributor.authorTuttle, Katherine R.
dc.contributor.authorWaikar, Sushrut S.
dc.contributor.authorFreeman, Michael
dc.contributor.authorKidney Precision Medicine Project
dc.contributor.departmentMedicine, School of Medicine
dc.date.accessioned2024-09-13T11:01:53Z
dc.date.available2024-09-13T11:01:53Z
dc.date.issued2022
dc.description.abstractAn 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.
dc.eprint.versionAuthor's manuscript
dc.identifier.citationButler CR, Appelbaum PS, Ascani H, et al. A Participant-Centered Approach to Understanding Risks and Benefits of Participation in Research Informed by the Kidney Precision Medicine Project. Am J Kidney Dis. 2022;80(1):132-138. doi:10.1053/j.ajkd.2021.10.006
dc.identifier.urihttps://hdl.handle.net/1805/43305
dc.language.isoen_US
dc.publisherElsevier
dc.relation.isversionof10.1053/j.ajkd.2021.10.006
dc.relation.journalAmerican Journal of Kidney Diseases
dc.rightsPublisher Policy
dc.sourcePMC
dc.subjectAltruism
dc.subjectAutonomy
dc.subjectCommunity engagement
dc.subjectInformed consent
dc.subjectKidney biopsy
dc.subjectPrecision medicine
dc.titleA Participant-Centered Approach to Understanding Risks and Benefits of Participation in Research Informed by the Kidney Precision Medicine Project
dc.typeArticle
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