This Pathway to Independence Award (K99/R00) investigates and leverages perspectives from members of the health-related private sector genomics industry, to develop guidance for improving approaches to social and ethical issues in the industry. It does so through in-depth qualitative analysis (interviews, cases studies, comparative analysis), scholarly normative analysis (drawing on theories from bioethics and business ethics), and a Delphi process of iterative questionnaires with industry stakeholders, aimed at strategizing concrete change regarding social obligations of the industry.

PROJECT NARRATIVE Human genome editing is a powerful tool for creating precise changes to the genome, the complete set of genetic material. However, human genome editing raises significant ethical, legal, and social challenges, and making policy that can better anticipate and prepare for these challenges is urgently needed. This project will be the first comprehensive empirical study to apply strategies of anticipatory governance to the management and control of human genome editing technologies.

PROJECT NARRATIVE Advances in genome editing, embryology, and stem cell science are making it possible to imagine, and create, new kinds of human-animal chimeras that are both more biologically and more ethically complex than previously created chimeras. This project aims to develop clear, reasoned, and practical recommendations and educational materials to assist researchers, research institutions and their oversight bodies, funders and the public in identifying, understanding, and managing the ethical issues associated with human-animal chimera research.

PROJECT NARRATIVE This project is relevant to public health because achieving the health benefits of preventive gene editing research will depend on governance that is responsive to public concerns. This project is relevant to NHGRI?s mission because of the role that new genomic knowledge will play in the policy challenges that the research proposed here helps address.

This Pathway to Independence Award (K99/R00) investigates and leverages perspectives from members of the health-related private sector genomics industry, to develop guidance for improving approaches to social and ethical issues in the industry. It does so through in-depth qualitative analysis (interviews, cases studies, comparative analysis), scholarly normative analysis (drawing on theories from bioethics and business ethics), and a Delphi process of iterative questionnaires with industry stakeholders, aimed at strategizing concrete change regarding social obligations of the industry.