Citizens' lay expertise and experience of ethical issues in health are central to improve the healthcare system and build a societal-supported framework. The corona crisis has taught us how crucial it is to keep the general public's trust and support to make sense of rules and policies in health or any other field.
To demonstrate the significance of public engagement surrounding ethical issues in health, and more specifically in genomics, I started a PhD at UGent in collaboration with Sciensano, where I work as an ethicist. The PhD is titled Can citizens make a difference in bioethics? A critical approach to public engagement. Based on the public engagement projects my colleagues and I organized (Citizen forum, online DNA Debate) and will organize, these are the questions I would like to answer in my PhD:
- Main question: What is the added value of citizens through public engagement in genomics from an ethical perspective? In other words, what can citizens bring to bioethics in genomics through public engagement initiatives?
- Sub-question: Which influence do citizens have on bioethical principles in genomics through public engagement initiatives?
The theoretical part of the PhD analyzes the (added) value of citizens through public engagement projects for bioethics (e.g. new definition/understanding of bioethical principles; new ethical concerns non identified by experts; factually wrong opinions indicating both a need for public education, but mainly hiding important values, fears that need to be understood through qualitative analysis, etc.).
The practical part investigates the (added) value of citizens through public engagement projects for health policymakers, experts or other stakeholders in genomics. In other words, it investigates whether public engagement initiatives produce helpful, original and innovative results for those actors (from an ethical perspective), and why these actors should take citizens’ input through public engagement into account (e.g. How should citizen engagement practices influence policies from an ethical point of view?). For instance, citizens’ recommendations should not be taken literally, but the ethical values they expressed behind should.