The Public-Private Research Ecosystem in the Era of Genome Editing: Learning from the Past to Shape Future Governance
Saturday, October 14, 2023
7:30 AM – 8:45 AM ET
Location: Dover C (Third Floor)
Biomedical research in the US has long been conducted in a public-private “ecosystem.” Today, publicly funded researchers may reach a point where they hand off their research to the private sector for clinical development, often to small, venture capital-funded startups in which the same scientists have a financial interest: handing off the research to themselves, albeit wearing a different hat. This trend is intensifying with the growth of gene therapies and genome editing-based medicine. The growing centrality of this ecosystem raises numerous ethical questions, which we are addressing in our multi-year, multidisciplinary study of the evolving governance of genome editing. This presentation draws on 92 semi-structured interviews with scientists working across the public-private divide and their private sector business and financial partners. The questions we pose include: Are there differences between the ethical duties of researchers in the public and private sectors? Do these differences sometimes rise to the level of conflicts of interest? If so, are current ethical management structures—including IRBs, grant agencies, university governance systems, journal editors, and government actors—adequate to handle them? Does the involvement of profit-seeking investors threaten equitable access? And importantly, which stakeholders should be included in the public discourse about these questions and how can they join the discourse in meaningful ways? Preliminary analysis of the responses suggests that there is little concern about potential ethical dilemmas. Scientists are concerned, however, about the effect that their private collaborators’ profit incentive may have on their research objectives after the public-private hand-off.
Arlene Davis, JD – Professor, Social Medicine, UNC School of Medicine; Gail Henderson – Professor, School of Medicine, UNC-CH; Rami Major, BS – Genetics and Molecular Biology – UNC-CH; Rebecca Walker, PhD – Professor, School of Medicine, UNC-CH; Margaret Waltz, PhD – School of Medicine – UNC-CH