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

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

January 27, 2022

KPMP investigators recently published "A Participant-Centered Approach to Understanding Risks and Benefits of Participation in Research Informed by the Kidney Precision Medicine Project" in the American Journal of Kidney Diseases (AJKD). The purpose of the paper is to describe 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.

Within the publication investigators critically examined the reasons why a participant may choose to participate in a study such as KPMP, which involves some risk to participants but no direct clinical benefit. The publication was led by Drs. Catherine Butler and Michael Freeman. Dr. Butler is an Acting Instructor in the Division of Nephrology the University of Washington and a researcher at the Kidney Research Institute; she holds a Masters in Bioethics and focuses her research on improving equity and person-centeredness in kidney care. Dr. Freeman is an Associate Professor in Pediatrics and Humanities in the Division of Pediatric Nephrology at Penn State College of Medicine and also holds a Masters in Bioethics. He focuses his research on ethical analysis addressing collaborative decision making and policy development in kidney care.

Dr. Butler notes that “The KPMP is pushing boundaries, but that also means it’s been important to carefully consider the ethical underpinnings of research. Integrating community members into design and conduct of the KPMP has made the research itself better, but has also been critical to ensuring that the work is ethically sound and respects participants by enhancing the kinds of benefits to participation that may be important to them.”

Per Dr. Freeman, “The KPMP represents the developing approach of medical research as a community endeavor, shaped by the insights and values of the participants, researchers and clinicians who have worked collaboratively on its development. This paper provided the opportunity to center the values and experiences of the project participants in our ethical analysis, which will hopefully serve as a paradigm for other research studies moving forward.”

KPMP investigators were motivated to write the paper in the hopes it would 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.

Click here to read the article.