Fireside Chat: Engaging Patients in Ethical Questions — Lessons from Marginal Kidney Donation Research

When patients face long waits for kidney transplants, they may be offered “less-than-optimal” organs — those that might not last as long or function as well. But what does “acceptable risk” look like from a patient’s perspective? And how can patient and family partners meaningfully contribute to research that explores such ethically complex and emotionally charged questions?

In this fireside chat, a clinician researcher and a patient partner reflect on their experience co-developing and conducting a study that engaged patients and families around marginalized kidney donation. Following a short presentation on the project, the conversation will explore what meaningful engagement looked like in practice — from early design and ethical considerations to navigating sensitive discussions and integrating diverse perspectives.

The session will offer practical insights into how researchers, clinicians, and patient partners can work together on difficult topics with humility, respect, and shared purpose.

Learning objectives

By the end of this session, participants will be able to:

• Describe how patient and family partners can contribute meaningfully to research that explores complex or ethically sensitive health questions.
• Identify strategies for creating safe, inclusive spaces for engagement on topics that involve trade-offs, risk, or vulnerability.
• Reflect on how engagement with lived experience can deepen ethical awareness and improve the relevance and impact of research.
• Apply lessons learned from this project to their own contexts of patient and public engagement in clinical or health systems research.