WIPS - When is it Safe to Edit the Human Germline?
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When is it Safe to Edit the Human Germline?
Abstract: Shortly after development of the cutting-edge gene-editing tool, CRISPR-Cas9, major scientific institutions quickly advised a moratorium on clinical uses of the technology in early stage human embryos (Baltimore et al. 2015; Lanphier et al. 2015). Prominent scientists, like the president of the Royal Society Venki Ramakrishnan, stressed the need for public deliberation on the ethics of human germline gene editing (Ramakrishnan 2017; Lander 2015; Doudna et al. 2017). CRISPR-Cas9 makes what was once a trope for science fiction, a real possibility. Even though the groundbreaking tool makes human germline gene editing within technological reach, it nevertheless subjects future individuals to various types of potential harm. For many scientists, the “prudent way forward” is to focus on basic research for now until the technique has been made safe for clinical trials. Yet, this policy is doomed to fail. The reactive nature of the human germline means that basic research alone simply cannot eliminate unintended consequences on human development and health. To understand and improve germline gene editing techniques to avoid unintended consequences, clinical trials are likely to be required (Guttinger 2019).
If the scientific community and public decide it is worth conducting clinical trials to mitigate potential harm of human germline gene editing, can trials be performed in a morally responsible way? The aim of this paper is to outline what is necessary for an adequate theory of what makes clinical trials for human germline gene editing morally permissible. I clarify and defend two conditions that must be met for clinical trials to be morally justified. The conditions I defend have to do with what scientists must know to (1) identify the causally significant genetic determinants of a disease and (2) identify viable alternative genetic variants that are likely to make future individuals better-off than they would have been were genome modification not performed. My view outlines what conditions must be met for human germline clinical trials to be morally permissible for monogenetic and complex diseases. A further upshot of my argument is that it clarifies the role public input should have on deciding the future of genome modification research.