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It's important to remember this regarding Henrietta; Neither her nor her family were ever compensated for the 'use' of her biological material nor was consent

It's important to remember this regarding Henrietta; Neither her nor her family were ever compensated for the 'use' of her biological material nor was consent ever given for a donation. The medical-research community has profited incalculably from this. She would have been treated better if she had recorded a song.

mrfusion 7y ago
The needs of the many outweigh the needs of the few.
- UI_at_80x24 7y ago
  If the companies didn't profit from it, I'd fully agree with your statement.
  - theonlyklas 7y ago
    What is wrong with taking profit from their work? All she had a resource she wouldn't have been able to create value from no matter how much time she had in life.
    - close04 7y ago
      There are so many things wrong with the conclusion that whoever can make more value from something is entitled to take it, especially when we're talking about a human being. I'll tone down the analogy so we don't go into abject examples that would still perfectly fit your point. You probably don't create that much value from your house, land, car, etc. But companies still aren't entitled to take them from you simply because they can make more money from them. If you are not willing to give them up for free you're contradicting your own point. There's the mistaken impression that this is a 0 sum game and for companies to win, Henrietta Lacks and her family have to lose, it's expected of them. Or that the profits have to be exclusively on the company's side.
      - diamondlovesyou 7y ago
        Privacy implications aside, we're actually not talking about a human being. We're talking about a(n) (abnormal) cluster of non-critical cells in a human. You and I shed millions of these (all-be-it normal) cells everyday, in the form of skin flakes and hair. Similar if your skin is pierced, causing a bleed. Semen if male, mucosal tissue if female (and possibly the egg), feces, urine, all contain human cells. This isn't robbery.
        UI_at_80x24 7y ago
        Nobody is arguing that skin-cells that they picked-up off the floor is the same ballpark as a tissue sample that was taken in a biopsy, studied, and profited from. This wasn't accidentally obtained. They stole a winning lottery ticket and didn't share the winnings.
        close04 7y ago
        This is a very downplayed interpretation. During your whole life you will only use 2-3 of your sperm/egg cells "productively". The rest are literally thrown away, just like your shedding skin cells. Would you be OK with someone taking and using them for decades without you having a say? There are 2 aspects here. One is about ethics and privacy, someone took and continues to use these cells with no restrictions, like saying it's OK to have a slave because it was legal when you bought it. What other things are perfectly normal to take because you have more? The second is financial, you're expected to pay through your nose for using a 5s song snippet but use a piece of someone's body should only benefit the the ones who took it. Blood donors get paid and that's nowhere near as unique as this. I've seen people rationalize the Tuskegee syphilis experiment (people get syphilis every day anyway). Were you in her place you'd expect more of everything. More rights, more respect, more privacy, more money, etc. And I don't see anyone trying to fix past mistakes.
- whymauri 7y ago
  Does not make her treatment right. You must understand that the fundamental bioethical implications concerning consent in a medical setting are incredibly important. This conversation will only continue to become more relevant as biotechnology matures.
- knolax 7y ago
  In this case they weren't mutually exclusive, both the needs of the few and the many could've been met.
goldenkey 7y ago
Sounds like you have a gripe with the entertainment industry, not with free knowledge and generosity of humanitarian donation. Come from a place of abundance, not scarcity. We all lose when we try to spite only because we have been spited. https://www.youtube.com/watch?v=1XDpa2HLXV0&feature=youtu.be&t=7m5s https://www.youtube.com/watch?v=1XDpa2HLXV0&feature=youtu.be...
gwbas1c 7y ago
I think you make a lot of assumptions about what is considered ethical or obliged. My point is that you need to defend your assumption that maintaining cultures of tissue samples requires consent and compensation. Concepts like intellectual property (copyright / patent / trademark) don't apply to things like tissue samples.
Nasrudith 7y ago
Technically there were neither ethical nor legal frameworks at the time. That isn't a statement of relativism but to point out there was no legal construct for it. In my opinion using her treatment samples was grey to permissible (they already took them with permission and for a purpose serving her and it wasn't established as owned) but the deliberate morgue harvesting without permission crossed the line. Just keeping the samples could be like keeping say a record size tumor a surgeon removed in a formaldehyde barrel is creepy but precedented and doesn't do harm. Doing it to a patient's body without permission or another valid overriding reason (say epidemiology or diagnosis to living patients infected with the same disease) is just descreation.

mrfusion 7y ago

The needs of the many outweigh the needs of the few.

UI_at_80x24 7y ago
If the companies didn't profit from it, I'd fully agree with your statement.
- theonlyklas 7y ago
  What is wrong with taking profit from their work? All she had a resource she wouldn't have been able to create value from no matter how much time she had in life.
  - close04 7y ago
    There are so many things wrong with the conclusion that whoever can make more value from something is entitled to take it, especially when we're talking about a human being. I'll tone down the analogy so we don't go into abject examples that would still perfectly fit your point. You probably don't create that much value from your house, land, car, etc. But companies still aren't entitled to take them from you simply because they can make more money from them. If you are not willing to give them up for free you're contradicting your own point. There's the mistaken impression that this is a 0 sum game and for companies to win, Henrietta Lacks and her family have to lose, it's expected of them. Or that the profits have to be exclusively on the company's side.
    - diamondlovesyou 7y ago
      Privacy implications aside, we're actually not talking about a human being. We're talking about a(n) (abnormal) cluster of non-critical cells in a human. You and I shed millions of these (all-be-it normal) cells everyday, in the form of skin flakes and hair. Similar if your skin is pierced, causing a bleed. Semen if male, mucosal tissue if female (and possibly the egg), feces, urine, all contain human cells. This isn't robbery.
      - UI_at_80x24 7y ago
        Nobody is arguing that skin-cells that they picked-up off the floor is the same ballpark as a tissue sample that was taken in a biopsy, studied, and profited from. This wasn't accidentally obtained. They stole a winning lottery ticket and didn't share the winnings.
      - close04 7y ago
        This is a very downplayed interpretation. During your whole life you will only use 2-3 of your sperm/egg cells "productively". The rest are literally thrown away, just like your shedding skin cells. Would you be OK with someone taking and using them for decades without you having a say? There are 2 aspects here. One is about ethics and privacy, someone took and continues to use these cells with no restrictions, like saying it's OK to have a slave because it was legal when you bought it. What other things are perfectly normal to take because you have more? The second is financial, you're expected to pay through your nose for using a 5s song snippet but use a piece of someone's body should only benefit the the ones who took it. Blood donors get paid and that's nowhere near as unique as this. I've seen people rationalize the Tuskegee syphilis experiment (people get syphilis every day anyway). Were you in her place you'd expect more of everything. More rights, more respect, more privacy, more money, etc. And I don't see anyone trying to fix past mistakes.
whymauri 7y ago
Does not make her treatment right. You must understand that the fundamental bioethical implications concerning consent in a medical setting are incredibly important. This conversation will only continue to become more relevant as biotechnology matures.
knolax 7y ago
In this case they weren't mutually exclusive, both the needs of the few and the many could've been met.

goldenkey 7y ago

Sounds like you have a gripe with the entertainment industry, not with free knowledge and generosity of humanitarian donation. Come from a place of abundance, not scarcity. We all lose when we try to spite only because we have been spited. https://www.youtube.com/watch?v=1XDpa2HLXV0&feature=youtu.be&t=7m5s https://www.youtube.com/watch?v=1XDpa2HLXV0&feature=youtu.be...

gwbas1c 7y ago

I think you make a lot of assumptions about what is considered ethical or obliged. My point is that you need to defend your assumption that maintaining cultures of tissue samples requires consent and compensation. Concepts like intellectual property (copyright / patent / trademark) don't apply to things like tissue samples.

Nasrudith 7y ago

Technically there were neither ethical nor legal frameworks at the time. That isn't a statement of relativism but to point out there was no legal construct for it. In my opinion using her treatment samples was grey to permissible (they already took them with permission and for a purpose serving her and it wasn't established as owned) but the deliberate morgue harvesting without permission crossed the line. Just keeping the samples could be like keeping say a record size tumor a surgeon removed in a formaldehyde barrel is creepy but precedented and doesn't do harm. Doing it to a patient's body without permission or another valid overriding reason (say epidemiology or diagnosis to living patients infected with the same disease) is just descreation.