Nina Frahm and Tess Doezema
Originally published January 28, 2019
Here is an excerpt:
The research community widely agreed that He and his colleagues crossed an ethical line with the first inheritable genetic modification of human beings. Gene-editing experts as well as bioethicists described the transgression as being conducted by a “rogue” individual. But when leading voices such as NIH Director Francis Collins assert that He’s work “represents a deeply disturbing willingness by Dr. He and his team to flout international ethical norms,” what are they actually expressing concern about? Who determines what are the ethics of altering human life?
We believe that the alarm being sounded by the scientific community isn’t really about ethics. It’s about protecting a particular form of scientific self-governance, which the “ethics” discourse supports. What are currently treated as matters of research ethics are in fact political and social questions of fundamental human importance.
Key decisions about when and how it will be appropriate to make inheritable changes to human beings currently lie in the hands of scientists. Although ethics are repeatedly invoked, the most prominent condemnations of He’s actions don’t actually address whether it’s ethical to tinker with human life through gene editing. A largely ignored part of the story are the five “draft ethical principles” of He’s lab at the Southern University of Science and Technology of China. If the outcry from scientists was truly about ethics, we would be seeing a discussion of the relative merits of He’s ethical principles, engagement with their content, and perhaps an exploration of how to jointly achieve a better set of operating principles. Instead, the ethics of using CRISPR for germline gene editing have apparently been determined and settled among scientists, closing down a meaningful debate about the limits and opportunities of genetic engineering.
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