A cohort of pirate ships?

Biohacker ethics oversight, plus a lot of gene therapy news

Hey it’s Alex, thanks for reading! I really appreciate you opening this email and sharing it with your friends and colleagues. You probably noticed that this arrived on Monday instead of Thursday. Do you like that better? Let me know by replying directly or leaving a comment! 💜

The situation in Israel and Palestine has weighed heavily on my mind and on my heart for the past few weeks. As a Jewish person who opposes oppression in all its forms, I have felt stuck in the middle of an impossible choice. It’s in this sticky place that I tend to switch between deep breathing and voracious reading of nauseating headlines, and I’m unable to accomplish little else. But my personal discomfort is nothing compared to the struggle faced by Palestinians, especially when it comes to access to medical care during this raging pandemic. Vaccine access disparity is real and scary, hospitals are overrun, and Dr. Ayman Abu al-Ouf, who lead the response to the pandemic in Gaza, was killed in an airstrike. Israel must immediately mobilize to vaccinate people in the Palestinian territories.

Here’s the latest.

The Orphan Black podcast is getting another season

Yessss! Sestra dance!

One step forward, two steps back on abortion

I was relieved to see the news last month that the FDA was easing restrictions on access to abortions by allowing women to access the medication mifepristone through the mail, as opposed to being forced to go to a doctor in person for a prescription. However, courts in Ohio upheld a ban on abortions following a fetal Down syndrome diagnosis, and then lawmakers in Texas essentially banned abortion outright.

According to Guttmacher Institute, a reproductive health research group:

Since January, there have been 549 abortion restrictions, including 165 abortion bans, introduced across 47 states (all counts current as of May 16, 2021). A whopping 69 of those restrictions have been enacted across 14 states, including nine bans.

Check out this study about using a robotic third thumb
Read this book about our post-capitalist future

How do biohackers and community biologists feel about ethics oversight?

When academics say they’re “thrilled” and “delighted” to share their work, it’s not bullshit. Research papers can take years from start to finish, mostly because of an archaic system that relies on academics having full-time teaching jobs to support the energy devoted to research. Welp! That’s unsustainable! But I am truly thrilled (and relieved!) to share a new paper out this week in the journal Citizen Science: Theory & Practice. Along with my colleagues at Baylor College of Medicine, we spoke to dozens of biomedical citizen scientists about their views on ethics oversight mechanisms and what form a community bioethics body might look like and we wrote it all up in this paper, “A Cohort of Pirate Ships”: Biomedical Citizen Scientists’ Attitudes Toward Ethical Oversight.

Please check it out here!

Gene therapy round-up!

From the hyperactive investor cycle and news about the four (or more?) books on Crispr that have come out recently, you may be surprised that some gene therapies just don’t work. There’s still a long way to go for treatments for many debilitating genetic diseases. Endpoints News reports that Biogen’s therapy for a rare form of blindness “flopped” in a clinical trial, and in January, a trial for a therapy that would treat Duchenne muscular dystrophy was sent back to the lab after failing to improve muscle function for patients. The FDA also paused a trial for a rare heart disease earlier this month, and frustration is reportedly widespread in Huntington’s patient communities, as two potential gene therapy trials are shelved.

Meanwhile, there was positive news as well, as researchers announced that a therapy for the liver disease that Jesse Gelsinger had is doing well in a clinical trial. Gelsinger was the poster child of how gene therapy research can go wrong and his death set the industry back by a decade. It may be that as more gene therapies do show positive results, like this one for “Bubble Boy” disease, and this one for deafness from researchers at OSU, the spectre of Gelsinger is finally fading.

But, as gene therapies lumber toward the market, the biggest question remains, how do we pay for them?

I am once again asking to reinstate a bioethics commission

In case you missed it, here’s my essay for Biodesigned and a new one by colleagues Eli Adashi and Glenn Cohen in AJM. We come to the same conclusion: This is a critical body that we need in some form immediately.

Extra Credit:

The US patent system loves sex toys, JOTWELL
Don’t fall for this company that wants to predict the health of future children, Wired
Feminist eugenicists in China want the best sperm available, Sixth Tone
Mitochondria may play an even more important role in disease than we thought, GEN
Program for racist, sexist AIs moves forward at Google, MIT Tech Review
Designing for death, Biodesigned
The sex, lies, and videotape of cancer cells, Neo.Life
Doctors want to cancel the Olympics, NPR
The forgotten history of the first trans clinic, Scientific American