Medical tourism for this gene therapy is likely dangerous

Plus, vaccine patent waivers!

Hi, it’s Alex. Thanks for reading! Did someone forward you this email? Subscribe here.

This is a plea to the public: Can anyone explain the utility and/or benefit of selling human genomes as NFTs? I mean, for normal people who aren’t co-founders of genomics companies, why should anyone use this technology to tag their data and license its use? I’m perplexed.

Sure, using a blockchain to share data creates a slightly more controlled market. A person who wants to share their genome for research, for instance, can control who they share it with—and agree to an amount to be compensated for it—potentially with an increased level of protection than mainstream direct-to-consumer testing companies offer. Like Julia Roberts in Pretty Woman, “I say who, I say when, I say how much.” But why should an NFT come into the equation at all? If anyone has an answer other than ‘it’s fun public art,’ I’m all ears.

From where I’m standing, when we start to create nuance about ownership of people’s genomes and genomic data, we get eerily close to talking about ownership of people. Because in so many instances, we are only represented by our data. I’m genuinely interested: Why should anyone sell their genome as an NFT?

Leave a comment or forward this email to someone who will!

Here’s the latest:

This story has everything: Medical tourism, transhumanists, and human subjects research!

Anyone who’s followed the years-long quest by transhumanist Liz Parrish to promote herself and her company, BioViva, won’t be surprised that she’s at it again! According to Stat, her company experimented on six dementia patients in a gene therapy trial done in Mexico. It’s an impressive dodge of most major ethics and human subjects research standards that keep patients safe and medical experiments above board. It’s questionable if the Parrish study meets any criteria necessary for trials in the US.

Under regulated clinical research, investigators would be required to disclose an approved study design and methodology to the public in a database like before recruiting participants. Such a listing should describe what patients will be receiving, and how much, and how often, and how it will be administered, where it will be administered, what metrics will be used to determine if the treatment worked, and what the rules are for stopping if something starts to go awry.

Stat reports that after an analysis by bioethicist Leigh Turner, “Nearly all of that was missing here.”

This biotech reporter missed his calling as product influencer

Watch Technology Review senior editor Antonio Regalado swab himself with one of the new over-the-counter Covid tests now available in the US, and then read his review comparing three of them. Here’s hoping there’s more to come in this new format!

PhRMA leaders are crying about sharing patents

In response to President Biden’s promise to support waiving intellectual property rights for Covid vaccines, pharmaceutical industry group Pharmaceutical Research and Manufacturers of America (PhRMA) sent out a whiny press release wherein they insist the plan will result in “handing over American innovations to countries looking to undermine our leadership in biomedical discovery.” Sigh. Leave it to pharma companies to prioritize American “innovations” and “leadership” when people are still dying by the tens of thousands.

Of course, what they mean is this: without a blatant financial incentive to create vaccines, they see no other reason to do it. Germany has sided with pharma in the debate, and Bloomberg reports that a spokeswoman said, “The protection of intellectual property is a source of innovation and this has to remain so in the future.”

This is the incorrect take! It’s an especially egregious position considering much of the research for these vaccines was government funded, with orders for the vaccines already totaling over a billion dollars. It’s a bad look, PhRMA.

Sure, there is reasonable skepticism about the plan to waive IP controls for the vaccines and why that might not be the thing we need to get more jabs in arms (legal expert Jake Sherkow has a great thread on this), but even the CEO of Moderna agrees that it’s not the IP that’s the problem—it’s scale and manufacturing.

However, if waiving patent protection helps at all, it will probably be worth it in lives saved. It’s a pandemic!

More from the front lines of this academic meme-off

Thank you to Kelly Hills for this masterpiece, and to Fyodor Urnov for his take.

The original comic was by xkcd.

Extra Credit:

Tweaking the genes of wild animals could save endangered species and protect humans from disease. What could possibly go wrong? Neo.Life
Fearmongering about the fertility of trans men needs to stop, Slate
Should scientists be allowed to grow human embryos in a dish beyond 14 days? USA Today
Orthodox Jewish women on Instagram are a feminist fighting force advocating against dead marriages, Vogue
At long last, the first issue of the ‘Journal of Controversial Ideas’! BioEdge
Cherokee Nation has the first medical school on tribal land, JAMA
Listen: A physician and a philosopher on long Covid’s mind-body mystery, Stat First Opinion Podcast
One of Japan’s most beloved pop stars is a hologram, Experience
What to do if you’re feeling bad about your body lately, Vice