The breathtaking development of human genome editing technologies (HGE) technologies is transforming the way we approach questions in bioscience and medicine. These technologies are unprecedented and unpredictable, and as undesirable consequences occur; questions emerge about their control. One of the fallouts of the controversy was the identification of a network of individuals who were mentors, associates, and colleagues of He Jiankui. This proposal responds to the reports of shortcomings by institutions lack of reporting mechanisms and questions regarding professionals’ responsibilities.
The objective is to use linked qualitative and quantitative methods (a case study and follow-up surveys) to identify the most urgent ethical, legal, and political dilemmas emerging in the HGE research setting. With this data in hand, we aim to identify blind spots, and produce a set of proposed policy responses for more responsible and efficient governance by scientists, ethics advisors, and their research institutions.
Funded by NHGRI, Grant # 3R01HG010332-03S1; supplement to Preparing for Human Genome Editing Technologies: Determining Possible Scenarios and Ways to Govern Advancing Technologies in the Future