73 points by Balgair 8 months ago
While it may be taboo, I think it's important to add context to her impact. Her 'contributions' were more than a 'sad story'. She was a Black woman who was experimented on without consent and without compensation who created one of the most important cell lines in medical research. 'Contribution' implies she did it willingly. 'Sad' implies it was unavoidable. These were deliberate acts grounded in racism and sexism to rob an American and human being of any reasonable sense of dignity. The fact that she happened to have remarkable genetics is a key leverage point that can remind people of the importance of ethics, not just science. It's extremely important for that to be a part of the headline, not just a detail if you click through to the story.
A couple clarifications: it was the cancer that had the unique mutation, Henrietta was genetically healthy. Secondly, it wasn't an experiment, they took a biopsy: an important distinction because black people were literally experimented on from 1932 to 1972. Finally, the Wikipedia page downplays the racist element in the biopsy, claiming that "At that time, permission was neither required nor customarily sought."
Even if it was standard practice, it is not fair that pharma companies are making billions off of her cells when her descendants are struggling to get by
Market valuation is determined by supply and demand. HeLa cells are substitutable goods in that if Henrietta asked for money for the cells, it would have been easy to find some other donor.
Also it's overly simplistic to say pharma companies are making "billions" off her cells. HeLa is a part of the workflow but far far far from the only part. Also value is in the work of scientists understanding the cell biology using her cells as a model, not some inherent value in the particular genome of HeLa.
> it would have been easy to find some other donor
If I recall correctly they had been trying to grow a cell line for years. Her cancer had a specificity that made it possible.
Supply, demand, negotiating power, and the legal property framework in place. Lack didn't sell her cells, they were seized from her.
As much as this story is fascinating, "her" impact is actually non-existent. The cells of the HeLa line come from a routine biopsy; she had no knowledge and no part whatsoever in anything that was possible thanks to the cells line that was taken from her.
Would you see the same about the non-existent impact of a meteor that happens to crash into the Earth?
Why is this being downvoted? If people want female and/or black symbols, there are so many others who actually made a contribution (David Blackwell of the famous Rao-Blackwell equation, Shafi Goldwasser who won a Turing award, etc.).
Are we going to now start celebrating the people who got the first smallpox or polio vaccines as great contributors to science just because they were chosen to be the first for a procedure?
Attributing impact to figures who didn't personally do anything demeans the struggles and accomplishments of actual minority scientists.
The story of Henrietta Lacks has less to do with whether the acts were deliberately malicious and more about medical researchers, and humanity as a whole, coming to a realization that patient consent is a fundamental ethic, whereas going back to ancient Greek times, doctors would deliberately mislead patients about their condition because it was thought to be, "within their best interests," and because, "doctor knows best." Nazi medical experimentation where human beings were treated like animals in the holocaust was being brought to light around this same time in history, and in the subsequent decades the entire practice of patient consent was changed - it was the biggest thing since the Hippocratic oath.
Framing the conversation into the typical American oppression zeitgeist is ignoring the fact that Henrietta played a role
in changing how humans looked at this ethical conundrum, period. This change in thinking will last forever, whereas America will not, just like the Ancient Greek civilization did not last forever, but much of the thinking and discovery influenced the rest of history (such as the Hippocratic oath). She allowed her cells to be used - she choose to be trusting to the doctors who were treating her, having no idea whether she would be OK or not, having no idea what would happen in the future, and then the doctors turned around and shared her cells for free with thousands of other doctors because they saw it as a medical miracle. This has subsequently been discovered, from an ethical sense, to be totally immoral, regardless of the good intentions of the doctors, whereas previously it was considered a moral imperative. Her decision and role in this part of history didn't "remind us to think about ethics," it completely changed how this area of ethics are even thought about, and that will be a benefit to anyone who ever visits a doctor or has any medical problem, ever, which is pretty much 100% of everyone.
If anyone is curious about her life and contributions to science, I'd pick up a copy of The Immortal Life of Henrietta Lacks (https://amzn.to/2rLLIHU). It touches on some pretty heavy sociological issues as well.
Almost never upvote, but did here.
This book will be a quick read for most people, as the author is very good with her prose and knows how to weave a narrative. The impact that Ms. Lacks had on modern science cannot be understated, and it will be a good evening read that both gives you a basic run down of the impaction science that her cells had on modern medicine as well as a very sad story with some positive outlooks on the results of Ms. Lacks' contribution to modern medicine.
Also Adam Curtis's "The Way of All Flesh".
Radio Lab did a great episode on Henrietta Lacks in 2010: https://www.wnycstudios.org/story/91716-henriettas-tumor/
It is apparently not unusual for hospitals now to do pelvic exams on anesthetized patients without consent:
Pelvic Exams On Anesthetized Women Without Consent: A Troubling And Outdated Practice:
The OP is a light, short article that thoroughly justifies the title. Not sure why the HN title is different, editorialized, and less informative than the original article.
We changed the title from "The new Henrietta Lacks' portrait is really good".
Submitters: please follow the HN guidelines, which ask: "please use the original title, unless it is misleading or linkbait" and "Don't editorialize."
The one piece of imagery, the piece doesn't mention. Her hat is designed to deliberately echo renaissance halos, I guess.