In “Tomorrow’s children,” Erika Check Hayden places people with disabilities at the center of the heated debate over whether doctors should repair defective genes in unborn children. Erika uses patients’ own stories together with published research to correct pervasive misconceptions about people with disabilities, showing why many say they would choose not to “fix” their own genetic glitches, even if they could.
The piece comes at a critical point, as scientists and doctors are deciding whether to use powerful new gene editing technologies, such as CRISPR, to rewrite faulty genes in embryos. Chinese researchers have twice used CRISPR to edit human embryos in the lab, while the global scientific community is debating whether to lift a self-imposed moratorium on using CRISPR in human embryos that are intended to yield a viable pregnancy. This discussion has ignored the voices of people who live with genetic diseases, and who will be most directly impacted by decisions about how to use these technologies.
“Tomorrow’s children” shows that many people with severe, fatal genetic disease would embrace the possibility to correct their own or their children’s genetic glitches. But other people and families who live with less severe genetic diseases would not change their own genetic makeup, or their children’s, even though they live with conditions that cause significant social, economic and physical hardship. For instance, one father, Ethan Weiss, describes the determination he sees in his daughter, Ruthie, who is legally blind and has albinism. Last season, Ruthie practiced by herself for hours to become the best player on her grade school basketball team. Weiss wonders if Ruthie would have the same grit if she hadn’t had been born with a disability.
Many people living with disabilities also fear that the decision to use an embryo-editing technology would make society less hospitable for people living with disabilities — and thus, for everyone, because most people live with a disability at some point in their lives.
The story is the first to give patients a voice in the public discussion about whether CRISPR should be used to modify genes in unborn babies. Erika tells patients’ stories through compelling narrative, helping a reader to understand why someone living with a disability might forego the opportunity to “cure” herself. And she draws upon research finding that many people living with disabilities say that they have a “good” or “excellent” quality of life. The story is accompanied by a podcast interview with Tim Renkow, a writer and comedian who has cerebral palsy, about scientific research that aims to eliminate disabilities.