Science and Social Governance: Lessons from the Human Genome Editing Debate

This thesis responds to the question, "Can Science Make Sense of Life?" through a structural lens of the Human Germline Genetic Editing debate. I explore who is absent from the table, and how the ways of thinking that dominate marginalize and exclude alternative frameworks and considerations. This analysis is centered around an examination of several perspectives from the disability community and an in-depth study of how the Orthodox Jewish community contends with genetic disease. These perspectives illuminate several lessons that prove to bring insight not merely to questions of permissibility on genetic editing, but also offer reflections on the larger relationship between science, technology, and society. I then return to the mainstream genetic editing debate to show how the culture it is born out of and the structures it has ingrained prevent lessons such as these from impacting the conversation. In light of such structures that continuously reproduce the assertion that it is science, not humanity, that is able to make sense of life, my final argument is that though science tends to gatekeep questions of emerging technologies by centering conversations on highly advanced and methodological considerations, public individuals need not feel as if they are irrelevant or unessential. Though science may offer one solution, it is the individuals and communities, not results from a lab, that are equipped to determine if it is the best solution.