Selecting For Disability: How an Anecdote Can Inspire Regulation of Genetic Reproductive Technologies
Abstract: Research on rapid developments in genetic reproductive technologies traditionally deals with the ethics of offspring selection. The scholarly debate mostly explored the "new eugenics" implications of selecting against embryos genetically found to have a disability. However, some have raised concerns about prospective parents with disabilities selecting for an embryo with the same disability. This essay is the first to examine evidence on the existence of selecting for disability and demonstrates that there is lack of evidence for such parental choices. This essay traces discussions on this matter to one single story published in the media in 2002 which reported on an American Deaf couple who chose a deaf sperm donor to have deaf children. The story inspired a moral panic leading to the enactment of legislation in the United Kingdom that bans prospective parents from selecting embryos with disabilities over embryos that do not. Despite the sensationalism of the story, the couple and their children live a happy and full life as part of Washington DC's large Deaf community. By foregrounding the UK legislation and its origin, this essay argues that regulation of genetic reproductive technologies should be based on evidence of an existing problem and not on a moral panic based on speculations. This essay also highlights how the regulation of prospective parents selecting for disability expresses problematic ableist messages about life with a disability. This discussion is a cautionary tale at a time when state legislators and courts are poised to intervene on the issue of reproductive rights.
Doron Dorfman is a Professor of Law at Seton Hall Law School. His research and teaching focus on health law, disability law, employment law, torts, and family law. Dorfman’s work has won multiple writing awards, was cited by federal courts and the Israeli Supreme Court, and was featured in the New York Times, Washington Post, Los Angeles Times and USA Today.
In 2023, Professor Dorfman was honored with the national Michael J. Zimmer Memorial Award for a rising scholar who has made a significant contribution to the field of work law. In 2021, the American Society for Law, Medicine, and Ethics recognized him as a Health Law Scholar. The same year, Dorfman was invited to testify before Congress on the relationship between vaccine requirements and anti-discrimination law.
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