Please don't edit me out
By Rebecca Cokley,
The Washington Post
| 08. 10. 2017
It’s ironic that news of a breakthrough in human gene editing was released on July 26. That was the 27th anniversary of the Americans with Disabilities Act, the landmark civil rights legislation intended to remedy centuries of discrimination against 57 million disabled Americans. And yet the announcement served as another reminder that there is still much desire to put those rendered undesirable in our place.
Nearly 1 out of every 5 people in this country has a disability. What would it mean for society to render such a large group of people “unfit” for the human germline? Stories about genetic editing typically focus on “progress” and “remediation,” but they often ignore the voice of one key group: the people whose genes would be edited.
That’s my voice. I have achondroplasia, the most common form of dwarfism, which has affected my family for three generations. I’m also a woman and a mother — the people most likely to be affected by human genetic editing.
I remember clearly when John Wasmuth discovered fibroblast growth factor receptor 3 in 1994. He...
Related Articles
By Grace Won, KQED [with CGS' Katie Hasson] | 12.02.2025
In the U.S., it’s illegal to edit genes in human embryos with the intention of creating a genetically engineered baby. But according to the Wall Street Journal, Bay Area startups are focused on just that. It wouldn’t be the first...
Several recent Biopolitical Times posts (1, 2, 3, 4) have called attention to the alarmingly rapid commercialization of “designer baby” technologies: polygenic embryo screening (especially its use to purportedly screen for traits like intelligence), in vitro gametogenesis (lab-made eggs and sperm), and heritable genome editing (also termed embryo editing or reproductive gene editing). Those three, together with artificial wombs, have been dubbed the “Gattaca stack” by Brian Armstrong, CEO of the cryptocurrency company...
By Emily Glazer, Katherine Long, Amy Dockser Marcus, The Wall Street Journal | 11.08.2025
For months, a small company in San Francisco has been pursuing a secretive project: the birth of a genetically engineered baby.
Backed by OpenAI chief executive Sam Altman and his husband, along with Coinbase co-founder and CEO Brian Armstrong, the startup—called...
By Antonio Regalado, MIT Technology Review | 10.31.2025
A West Coast biotech entrepreneur says he’s secured $30 million to form a public-benefit company to study how to safely create genetically edited babies, marking the largest known investment into the taboo technology.
The new company, called Preventive, is...