Research Project
10404434
PROJECT SUMMARY (PARENT GRANT) Human genome editing is a powerful tool for creating precise changes to the genome, an organism?s complete set of genetic material. With these advances has come an explosion of interest in the possible applications of genome editing, both in conducting basic research and the potential to prevent, treat, and cure disease and disability. Genome editing could provide insights into reproductive failures and improve contraception and fertility treatments. Editing the human germline might prevent genetic disease in future children and their descendants, and recent experiments with non-viable and viable human embryos tested germline editing in genetic disease, examining the safety and feasibility of the CRISPR/Cas9 approach. The rapid pace of human gene editing science raises significant ethical, legal, and social challenges, and policy making that can better anticipate and prepare for these challenges is urgently needed. The National Academies of Sciences, Engineering and Medicine (NASEM) has issued three reports on emerging genetic technologies. Each report calls for better ways to anticipate the future of these technologies, including robust levels of values-based public engagement. The long-term goal of our research is to develop a robust, scalable, model of anticipatory governance for human genome editing technologies that incorporates public values. The objective of this proposal is to use an anticipatory approach with a group of experts and engaged publics to identify the most urgent ethical, social, and political dilemmas that emerge in a set of plausible futures of genome editing. With our experts, we will evaluate existing governance structures, identify blind spots, and produce a set of proposed policy responses. This project would be the first comprehensive empirical study to apply strategies of anticipatory governance to the management and control of genome editing technologies. It will be the first end-to-end application of anticipatory governance in the life sciences, where robust public engagement is bookended by expert stakeholder deliberations. It will improve the guidance of this research by using methods in foresight and engagement with key stakeholders and the public to identify the most plausible ethical, legal and social challenges informed by scientific and technical realities. If genome editing is eventually considered safe and effective, the time for constructing frameworks of anticipatory policymaking is now, not after the technologies have already emerged.
