i only read two comments on the NYT article before i shut it down. bodily. autonomy. motherfuckers. NIH got a lot of nerve continuing to walk over the Lacks family the way they did.
The Immortal Life of Henrietta Lacks is a really great book that documents her life, death, and how her cancer cells are pretty much responsible for a ton of the medical breakthroughs we've had. The family will likely never be compensated for this, though, and a good chunk of the family still lives in a very poor, rural area. At least, at the time of reading the book, which was several years ago now.
I'm glad they're finally getting some say over how the HeLa genomes will be used, but really, this is long, LONG overdue... and not enough, tbh.
I absolutely agree with all of this. I loved that book, it was so well written but so, so angering. The Lacks family should absolutely not be suffering while people continue to get rich off of her stolen cells. This is a step in the right direction, but it's far from being enough.
I just do not get how anyone can profit off of this woman's body and NOT give any of it to the family. As you said they're still living in poor rural areas. This is really outrageous. The potential for profit here is insanely huge.
I wonder how many other people's cells are out there where there was no consent because they were young, or minority, or uneducated, or in prison, or disabled, or fill in the blank with whatever class of person supposedly didn't have the God given right to consent to use of their tissues?
Would Lacks or her family have been paid for her cells if there had been transparency throughout? Isn't it likely she would have given permission for the greater good? I'd probably do that now and surely health care for profit wasn't such a known thing in her day.
Considering the time, I'm not sure the question would have even come up. Biotech was in its infancy - things like HeLa cells are one of the reasons it was able to take off in the first place - and while medicine may have been a bit less 'big business' then it was on average much more paternalistic in approach than is generally accepted today.
I don't know if they would have been paid, but there's a moral issue here, if you're going to potentially make a fortune (and there can be a lot of money out there in this, going forward,) it is reasonable and right that some percentage even a small one, go to the person who made it possible or their estate. Obviously if there is no profit, there is no issue, but everyone reading this knows there will be. There's a reason for orphan drugs and 10,000 a dose medications. Because if there's no profit nobody cares.
I doubt Lacks and her family wouldn't have been paid for her cells in any case. Really, why would them have been? The cells were of no use to Ms. Lacks or her family and it wasn't even clear when they were taken that they would be of use to medical science. The benefits that have been derived from the cells could in no way have been predicted before hand.
Even though she had no use for her own cells, they're still hers and they were taken from her without permission while they were treating her cancer. Also, it's been 60 years since this first happened -- that's a lot of room for them to have determined that her cells were indeed helpful and that she should be retroactively compensated, or at least her family told about it. I know part of that is because the doctors who took her cells never documented her name anywhere and it took some serious digging for people to connect the dots, but... idk, your comment sounds to me like you're saying that her family shouldn't receive any compensation and taking people's genes without permission is really no big.
That's exactly what I'm saying. Her family shouldn't receive any compensation because the cells were taken as part of the diagnosis and treatment of her cancer. The part that was done without express permission was using the left over bits (which would be considered medical waste) for research which was how things were done at that time. Yes her cells were helpful but only because a number of researchers came up with clever ideas as to how to use them. Neither she nor her family had anything to do with that.
I see. Henrietta's cells actually were special because they could actually stay alive long enough to be tested on; before coming across her cells, research was stunted because it was so hard to keep cells alive. I'd say that she had something to do with it, since it was her cells, a very core part of her body.
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I'm glad they're finally getting some say over how the HeLa genomes will be used, but really, this is long, LONG overdue... and not enough, tbh.
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I loved that book, it was so well written but so, so angering. The Lacks family should absolutely not be suffering while people continue to get rich off of her stolen cells. This is a step in the right direction, but it's far from being enough.
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I wonder how many other people's cells are out there where there was no consent because they were young, or minority, or uneducated, or in prison, or disabled, or fill in the blank with whatever class of person supposedly didn't have the God given right to consent to use of their tissues?
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Would Lacks or her family have been paid for her cells if there had been transparency throughout? Isn't it likely she would have given permission for the greater good? I'd probably do that now and surely health care for profit wasn't such a known thing in her day.
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