How much are the first cloned human cells worth?
Plus, circumcision is falling in popularity, and we need an embryo regulator.
Hi, it’s Alex. Thanks for reading, and welcome to all the newcomers! 💜
A lawsuit filed in Baltimore this month by the estate of Henrietta Lacks is demanding biotech giant Thermo Fisher Scientific pay the family of a black woman whose unique cells had an incalculable impact on medicine. Lacks underwent treatment for cervical cancer at Johns Hopkins in 1951, when doctors took samples from her body without her consent. Researchers later discovered that HeLa cells thrived in a lab setting, doubling day-to-day, where other samples from cervical cancer patients died quickly.
At the time, it’s important to note, the field of bioethics didn’t exist. There was no such thing as patients’ rights, medical privacy, or asking for consent at most hospitals in the 1950s—those concepts are still very much in flux and we are constantly trying to innovate around bioethics. But Henrietta Lacks was unable to benefit from any of the medical ethics norms we have now.
HeLa cells were the first human cells to be cloned, and they have been used widely in research for the past half-century. But Lacks was never compensated for her contribution, her cells were taken without her knowledge, and while the pharma industry has benefited financially from patenting research that depended on HeLa cells, generations of the Lacks family have suffered from lack of access to care, according to Rebecca Skloot’s book, The Immortal Life of Henrietta Lacks. Now, the family members are looking for a share of the profits. The lawsuit alleges that biotech corporations, which have made billions, have benefited from “unjust enrichment.”
So, does the Lacks family deserve a piece of the pie? Probably. Do they have a case? Unfortunately, it’s unlikely, according to legal experts.
Health law professor and biotech IP specialist Jacob Sherkow suggested on Twitter that there are two separate issues at stake, which are: “(a) Whether Henrietta Lacks was harmed by JHU's docs (possibly); (b) Whether Henrietta Lacks' *descendants* have a claim against purchasers of the HeLa cell line (unlikely). Even a strong finding of (a) doesn't dictate result in (b).”
Legal chatter on my feeds seems to lean toward the potential for an unfavorable result for the Lacks estate, but I’ll be watching with interest as this case evolves. My personal feeling is that the Lacks family should absolutely be compensated in a big way for their ancestor’s contribution to science. But I don’t know the best way to compel biotech companies to do the right thing, especially after so many decades.
What do you think? Leave a comment or reply to this email.
Here’s the latest:
Biohackers are the unsung heroes of the Covid pandemic
An LA Times piece this week features a lot of Community Bio folks and the founder of Opentrons, Will Canine, in a big way. It’s a “Biohacking 101” story that touches on the history of the movement, an FBI agent who has been building bridges for a decade, and many of the longtime founding members of the community—some of whom have been hustling to build Covid solutions for the past 18 months.
Designer babies news of the week
Polygenic risk screening, the wobbly practice of using variants in a person’s genome to make wild guesses about their future, is “not seen as ready for primetime use,” according to Montreal-based bioethicist Vardit Ravitsky. That’s unfortunate, because there are already companies marketing it. So, as a society, we should probably figure out a narrative to explain its lack of usefulness to would-be customers, as well as consider options for how to regulate IVF add-on treatments and products. That said, we’re certainly getting closer to understanding which genes are associated with which traits.
In other news, there have been some advances within mammalian in vitro gametogenesis research—making engineered sperm and egg cells from other cells. The TLDR of this progress update is that leading researchers are getting closer to making IVG work in mice (human cells are further away), and they have a generally optimistic outlook. So obviously, the authors add the mandatory “use of IVG-derived gametes for human reproduction will require careful legal and ethical discussions.”
Here’s an idea: We should have FDA spin out a new fertility industry/embryo research/designer baby regulatory agency, like other countries have.
The Lancet has entered the chat
From the Editor: “The exhibition review from which The Lancet cover quote was taken is a compelling call to empower women, together with non-binary, trans, and intersex people who have experienced menstruation, and to address the myths and taboos that surround menstruation.” Cool!
Related excellent news, because neovaginas are also vaginas: Colorado to expand insurance for gender-affirming care, The 19th.
If you read nothing else in this email, please read this article about a pharmaceutical testing company in Washington and their absolutely wild fraud.
Then, get yourself 20% off a subscription to Sex, Drugs, and Biotech! Click below to pay a little bit for my sass and thought leadership — thanks in advance!
A lot of chatter about circumcision 🍆✂️
An essay in the New Yorker from my favorite anti-techno-utopian novelist has a lot of commentators really upset. Gary Shteyngart writes about his “botched circumcision” and the resulting decades of discomfort:
The surgery was performed under general anesthesia at Coney Island Hospital, the Chabadniks singing and praying joyfully in an adjoining room, and resulted in an immediate infection as well as painful urination that lasted until I was nine.
What a visual for Jewish parents like me. I felt a full-body cringe at this description and at many other points in the article. But it was a staggering and courageous piece about a touchy subject that rarely gets primetime attention.
In a somewhat surprising development, I also learned that Jewish “intactivists” are a growing force. A newly launched nonprofit organization, Bruchim, suggests progressive Jews should embrace a new birth rite, the brit shalom. And a response to the Shteyngart piece is trending on Kveller.
While the debate has raged for years in bioethics circles, the rite of circumcision in Jewish and Muslim communities is unlikely to go away entirely. In the US, where the practice is normalized despite the rate dropping sharply, even babies from secular homes are still routinely circumcised. Two studies found that the biggest indicator of circumcision is the status of the father — so as long as it’s the default choice, the practice will be around at least another generation… But the chatter has certainly increased this week.