Every two years, the Stevanovich Institute on the Formation of Knowledge announces a new research theme designed to shape some of the work undertaken at the Stevanovich Institute during that period and to be the focus of our biannual conference.
The research theme for 2018-2020 is “Genetic Medicine and Eugenics.” The dream of trying to perfect the human race through genetic intervention recently acquired a new life—and a very public one—by the announcement of the Chinese scientist claiming to have made the first babies resistant to HIV. His news and his experiment were almost universally condemned, but the question of what is moral, from the point of view of public opinion and medical advance, is not so easy to decide. Now more than ever, the relationship between medical intervention by such means as CRISPR and the discredited and racist science of eugenics demands exploration and intervention by scholars and thinkers from as many fields as possible: medicine, ethics, history, disability rights, anthropology, genetics, biology, politics, and others.
Some scholars have argued that genetic intervention into the human body is, in effect, eugenics, but dressed up in less objectionable clothing. Others deny any relationship between the ravaging force of 20th century eugenics and the improvements to health made possible by gene editing. Still others have endorsed what they are calling “a new eugenics.” Julian Savulescu, for example, claims that eugenics in the past was corrupted by bad science and state intervention, and that we have a moral obligation to prevent some forms of disabilities if we have the science to do it. But this is, of course, a slippery slope. Who gets to decide what’s a disability? It is alarming to realize that the US sterilization program that targeted “inferior” Americans was endorsed by our own Supreme Court in Buck v Bell in 1927. One question that needs to be asked is clearly, how and why is the sort of eugenic mentality promoted by Galton and Beveridge different from today’s world of gene editing? We may decry sterilization policies and educational innovation, but how do we make sure that the road we travel today is a good one? And then again, who decides what “good” is in the first place?
The National Human Genome Research Institute steps carefully around these topics, identifying the current major issues in the fields as “coverage and reimbursement,” “privacy,” “intellectual property,” and “informed consent” as well as “genetic discrimination” and “human subjects research.” It optimistically aims for a future in which it is possible to ensure that “all populations benefit from the advances of genomics research.” Would that it were so simple! As Eric Cohen and Robert P. George of the Brookings Institute write, “American constitutional principles and institutions provide the frameworks and forums for democratic deliberation regarding bioethical and other important moral questions, but in most cases it will not be possible to resolve them by reference to norms that can fairly be said to be discoverable in the text, logic, structure, or historical understanding of the Constitution.”
Indeed, it will be difficult to see ahead of time the scientific, economic, racial, and social impact of the medicine we do today. Such are the questions we hope to raise at SIFK over the next two years and at our 2020 conference.