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Would you pay to have the ‘best baby’? Liberal eugenics and the troubling quest for human perfection

For decades the idea of eugenics has been taboo. Now it is returning in a new commercial guise

For a very long time, I dreamed of being cured. I was born in 1981. I learned to walk early enough, but I stumbled and fell more easily than other children. My parents began to worry that something was wrong, that my muscles were weaker than they should be. Eventually, at the age of three, I was diagnosed with a form of spinal muscular atrophy (SMA). In the 1980s, the precise mechanics were not yet understood, but the condition was known to be hereditary, probably linked to a recessive gene. It was also known to be progressive. As I aged, my muscles would not keep pace. At eight, I began to use a wheelchair for longer distances. By the time I was 18, I rarely walked outdoors any more.

It is hard to be young and to know that you are growing weaker rather than stronger. I had all the same aspirations that my nondisabled friends did, but I lived in fear of the future in a way they did not. I spent a lot of time thinking about what my life would have been like if I didn’t have SMA. The images in my head were of something like a double: myself, only rid of this one deficit, imprecisely defined, but encoded somewhere in my body.

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© Illustration: Ryan Evans/The Guardian

© Illustration: Ryan Evans/The Guardian

© Illustration: Ryan Evans/The Guardian

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My mother donated her body to science. I really wasn’t prepared for what came next

The process included a gala featuring medical students doing aerial yoga and singing Taylor Swift to donors’ families. In some ways, it was absolutely perfect

When my mother, Erin O’Connell, was diagnosed with a rare and aggressive cancer in late 2022, one of her first thoughts was: “What will I do if I can’t work?”

At the time, she was 62 years old and working as a physical therapist in Portland, Oregon, where she had recently moved to live closer to me and my family. Reluctantly, she filed for short-term disability from her job and paused her training to become a volunteer search and rescue EMT.

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© Illustration: Ibrahim Rayintakath/The Guardian

© Illustration: Ibrahim Rayintakath/The Guardian

© Illustration: Ibrahim Rayintakath/The Guardian

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Christina Applegate's experience highlights challenges of diagnosing MS

When actor Christina Applegate revealed that she had been misdiagnosed with multiple sclerosis, it triggered not only an outpouring of empathy for her, but raised important questions about how often people are told they have the condition when they don't. William Brangham discussed why MS can be so difficult to diagnose with Dr. Michael Kornberg of Johns Hopkins University.

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