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A Participant-Centered Approach to Understanding Risks and Benefits of Participation in Research Informed by the
Catherine R Butler1, Paul S Appelbaum2, Heather Ascani3
1Division 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.
Summary
This study examines ethical considerations for human subjects research, like the Kidney Precision Medicine Project (KPMP), focusing on participant benefits beyond direct clinical outcomes. It proposes a framework to better support and respect individuals in high-risk research, especially for kidney disease patients.
Area of Science:
- Bioethics
- Nephrology Research
- Human Subjects Research Ethics
Background:
- Ethical conduct in human subjects research requires careful risk-benefit analysis, particularly when direct clinical benefit is not anticipated.
- The Kidney Precision Medicine Project (KPMP) exemplifies research involving procedures like kidney biopsy, necessitating a thorough ethical review.
- Understanding participant perspectives on benefits is crucial for ethically sound research design.
Purpose of the Study:
- To critically examine the ethical underpinnings of human subjects research involving risk without direct clinical benefit.
- To develop a comprehensive conceptualization of potential benefits for research participants, extending beyond direct clinical gains.
- To offer a model for researchers, ethicists, and regulators to enhance participant respect and support in research, particularly for individuals with kidney disease.
Main Methods:
- Analysis of ethical considerations within the Kidney Precision Medicine Project (KPMP) framework.
- Conceptualization of participant benefits, including respect for values, altruism, and community impact.
- Illustrative use of KPMP's research paradigm to define broader benefit categories.
Main Results:
- Identified diverse potential benefits for research participants, such as respecting pluralistic values and enabling altruistic actions.
- Highlighted the importance of community-level benefits as a factor for participant engagement.
- Emphasized the need for a broader understanding of benefits in research ethics.
Conclusions:
- A comprehensive view of participant benefits is essential for ethically sound research involving risk.
- The proposed conceptualization can guide improvements in respecting and supporting participants in future research.
- This ethical framework can enhance the quality of research for individuals with kidney disease and other conditions.
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