The bizarre cruelty of Elon Musk
Plus, regulating enhancements and going too far with prenatal testing
Hey it’s Alex. It’s still April, my favorite month, so you can get a discount if you subscribe to this newsletter and help support my work. Thanks! 💜
I’m incredibly bored with the conversation around NFTs, a trend on a rapid upswing that makes digital art collectible. Ostensibly it helps support digital creators, but it also kills the planet and annoys the hell out of everyone. Still, I had to pause when I saw that the person who tweeted the viral sad sandwich picture from Fyre Festival is selling his Tweet as an NFT to avoid needing to start a GoFundMe to buy a kidney transplant. This is as fucked up as it is futuristic. Can we please not live in a world where we pay for medical costs like this? Health care is a human right.
In other bioethics-meets-cryptobros news, Elon Musk insisted once again that his Neuralink product will help people with paralysis “use a smartphone with their mind faster than someone using thumbs.” It takes a special kind of callousness to make outrageous promises to vulnerable people just to raise your stock price. Here’s a great take by Anna Wexler on the neurotech bubble.
Finally, I know we’re all stuck at home watching Zoom all day and our eyes are melting, but I loved watching Megan Palmer, ED of Stanford’s Bio Policy and Leadership Initiative, at a recent panel on the future applications of synbio. Among other things, she explained that one reason for the dramatic growth of the field was practitioners’ early focus on accessibility. (It’s still a huge part!) Click here or on her pic below👇 to watch.
Here’s the latest:
Should FDA regulate non-therapeutic enhancements?
Consider this a great favor for all the non-lawyers in the room who have adverse reactions to reading 71 pages of legal jargon and citations: I read this wonderful article by Patti Zettler that lays out the case for non-therapeutic enhancements, wrinkle removers, recreational drugs, and similar products to be able to pass muster from the FDA.
What counts as an enhancement? I love this definition by Dov Fox:
Enhancements are distinct from other biomedical products in that they are put to uses which extend beyond the goal of preventing disease, repairing disability, and restoring physiological wholeness.
In other words, enhancements push you past your body’s normal state of functioning. Some examples of enhancements are Adderall, lip fillers, and cybernetic implants. These are fairly common things (or they will be soon). So then, shouldn’t the FDA be able to regulate enhancement products in the marketplace? You’d think. But Zettler points out that the agency often gets in its own way, saying that it’s impossible to measure safety and efficacy for these products. However—spoiler alert—that’s not true!
Zettler argues that FDA should reconsider its position because technology and society are going to force it to anyway:
…this question may become more salient, as changes in technology, law, and policy are poised to force the FDA to more frequently confront its possible authority over not just aesthetic uses of drugs and devices, but also recreational or enhancing uses.
Related: It’s Time to Make the FDA Independent, Politico
Related: FDA Should be Independent, Aspen Institute white paper
Related: Thread about how we shouldn’t weaken the FDA, we should make it independent. @gregggonsalves, Twitter
“Medicine has ignored these patients for so long that they live in a wild west of treatments… They saw the gap in research and did their own research on their own bodies.”
— Rutgers University sociologist Joanna Kempner talked about Clusterbusters, a DIY medicine group that researches cluster headaches, to the Washington Post.
Have we gone too far with prenatal testing? And why don’t we talk about it more?
A line in this new piece by Sarah Zhang in the Atlantic struck me right in the heart. She wrote that as parents overwhelmingly choose to abort fetuses with the extra chromosome that causes Down syndrome, it seems as though our entire society has ultimately judged that some lives aren’t worth living. Only 18 children were born with Down syndrome in the whole of Denmark in 2019, Zhang reports, and on average, that number is between none and 13.
I wonder if it’s possible that we’ve gone too far and too fast with the promise of prenatal testing, and if, as a society, we aren’t really making an informed choice. To me, at the very least, we should all be talking about this all the time and really consider our individual and societal complicity in wiping out a whole kind of person. Zhang also gave a great interview about her piece to The Open Notebook, a story-behind-the-story site about science reporting.
Update on another project (because I don’t have enough going on 😅)
I’m scheming about a podcast with my friend and favorite biotech reporter, Emily Mullin! We’d love to connect with people we can pitch to! Get in touch if that’s you.
A Womb with a View, Neo.Life
Paul Knoffler’s weekly reads on stem cells, The Niche
A brief history of Sensory Substitution Devices, CyborgNest