Grounded in Reality: Integrating Community Values and Priorities of End Users in Human Gene Editing

This paper was co-authored by PaSAGE Team Members: Kirsten A. Riggan, Assata Kokayi, Karen M. Meagher, Marsha Michie, Kiran Musunuru, Kelly E. Ormond, Andrea J. Schelhaas, Jane Q. Yap, Rosario Isasi and Megan A. Allyse

This publication highlights the importance of involving communities and the people directly affected by gene-editing technologies in decision-making processes. Instead of focusing solely on scientific or technical aspects, we argue for a more inclusive approach that considers all affected community groups' ethical, cultural, and societal values. This ensures that gene-editing practices align with the needs and concerns of real-world users, promoting fairness, trust, and more responsible use of such powerful technologies​.

Gene editing can be better aligned with public interests by integrating community priorities, such as concerns about safety, equity, and long-term consequences. This approach helps build trust, ensures transparency, and addresses potential ethical issues before they arise, making the technology more relevant and beneficial to society as a whole. Ultimately, our authors call for a collaborative model in bioethics that respects and includes multiple perspectives in shaping the future of human gene editing.

Citation: Riggan, K. A., Feys, R., Kokayi, A., Meagher, K. M., Michie, M., Musunuru, K., … Allyse, M. A. (2024). Grounded in Reality: Integrating Community Values and Priorities of End Users in Human Gene Editing. The American Journal of Bioethics, 24(8), 43–45. https://doi.org/10.1080/15265161.2024.2361880