12 votes

Henrietta Lacks estate sues company using her ‘stolen’ cells

7 comments

  1. [5]
    vord
    (edited )
    Link
    This got me thinking again about the weird situation we're in with things like placenta donation. It's not legal to sell your placenta. But you can keep it, to eat or pay someone to capsulize it...

    This got me thinking again about the weird situation we're in with things like placenta donation.

    It's not legal to sell your placenta. But you can keep it, to eat or pay someone to capsulize it for you. Or can donate it to a biotech company who can/will do their best to make millions/billions off of it. Sure, some great advancements will come of it, especially relative to 'chuck it in the trash'.

    But it feels strange that there will be people getting very wealthy from having access to something that legally has to be provided for free. Whereas many of the donors would have benefitted tremendously from being compensated for their donation. If only because they just had a child, possibly paying multiple thousands of dollars to do so (in the USA).

    It's that kind of thing that reenforces my thoughts surrounding public ownership of research and free access to medicine.

    7 votes
    1. [4]
      skybrian
      Link Parent
      If compensation were allowed, what do you think the price would be? If not that many donations are needed for research, maybe they wouldn't have to offer all that much to get a few? But another...

      If compensation were allowed, what do you think the price would be? If not that many donations are needed for research, maybe they wouldn't have to offer all that much to get a few?

      But another example to think about is organ donation. That's more fraught because there are long waiting lists and people die waiting for organ transplants.

      4 votes
      1. MimicSquid
        Link Parent
        And compensation for organ donations is a very very slippery slope towards semi-legal organ sales, which, while it might cut down on waiting lists, is inevitably going to mean poor people selling...

        And compensation for organ donations is a very very slippery slope towards semi-legal organ sales, which, while it might cut down on waiting lists, is inevitably going to mean poor people selling their organs to extend rich people's lives.

        6 votes
      2. [2]
        vord
        Link Parent
        You and @MimicSquid have definitely touched on a few very important things. And I agree, we don't necessarily want to be paying people for organs that are going to be providing a public benefit....

        You and @MimicSquid have definitely touched on a few very important things. And I agree, we don't necessarily want to be paying people for organs that are going to be providing a public benefit. And we definitely don't want to go down the slope where people might need to hurt themselves to make ends meet (or worse, financing organs to pay for new ones ala "Repo: The Genetic Opera").

        Perhaps it would be reasonable, to compensate for organs under very specific conditions. If they're going to a for-profit company which couldn't exist without them, that the donors get equal split of a large shareholder stake in the company (say 40% of ownership) for paying out profits. If it's organ donors upon death, it could go to the estate. But especially for organs like placentas where it's being regrown and ejected anyhow. Or things like those cells in the article. Providing everyone a higher standard of living (in and out of "developed" nations) would probably help reduce that demand for compensation as well, but that's definitely a bigger discussion.

        But even then, I don't think compensation is a good way because of the reasons you mentioned. Attribution and proper public ownership (no patents, copyrights, trade secrets, etc) would insure that any progress coming from donations are for the public benefit, and not gated behind a giant paywall going to a for-profit company for decades or longer.

        I certainly don't have a clear answer. I just think it's uncomfortable and worth thinking about. In the same way that McDonalds couldn't exist without the lowest-paid employees in the company, it feels problematic and exploititive that a few individuals might be catapulted to luxury, even fame, on the organs provided by others.

        2 votes
        1. TemulentTeatotaler
          Link Parent
          There was a podcast episode on the economics of blood donation that might be of interest. From what I recall, the U.S. is somewhat unique in allowing compensation for plasma, and it also provides...

          There was a podcast episode on the economics of blood donation that might be of interest. From what I recall, the U.S. is somewhat unique in allowing compensation for plasma, and it also provides ~1/2 of the plasma in the world.

          Certainly not something to take lightly, with all the potential for abuse and perverse incentives. It's an uncomfortable question of whether giving someone struggling an option to sell plasma (or eggs, organs, etc.) is helping or exploiting. My patchy recall of stories on the "surrogate mother" industry (in India?) was that a lot of that got exploitative.

          3 votes
  2. [2]
    AugustusFerdinand
    Link

    The estate of Henrietta Lacks sued a biotechnology company on Monday, accusing it of selling cells that doctors at Johns Hopkins Hospital took from the Black woman in 1951 without her knowledge or consent as part of “a racially unjust medical system.”

    “It is outrageous that this company would think that they have intellectual rights property to their grandmother’s cells. Why is it they have intellectual rights to her cells and can benefit billions of dollars when her family, her flesh and blood, her Black children, get nothing?” one of the family’s attorneys, Ben Crump, said Monday at a news conference outside the federal courthouse in Baltimore.

    Johns Hopkins said it never sold or profited from the cell lines, but many companies have patented ways of using them. Crump said these distributors have made billions from the genetic material “stolen” from Lacks’ body.

    The lawsuit asks the court to order Thermo Fisher Scientific to “disgorge the full amount of its net profits obtained by commercializing the HeLa cell line to the Estate of Henrietta Lacks.” It also wants Thermo Fisher Scientific to be permanently enjoined from using HeLa cells without the estate’s permission.

    5 votes
    1. Omnicrola
      Link Parent
      Feels very much like a David and Goliath kind of situation. I look forward to seeing how this plays out. It will probably take years and maybe even decades before the family sees a single dime...

      Feels very much like a David and Goliath kind of situation. I look forward to seeing how this plays out. It will probably take years and maybe even decades before the family sees a single dime even if they do win. I wish them all the luck and hope they stick with it.

      3 votes