Thursday Throughput: HELA Edition

Michael Siegel

Michael Siegel is an astronomer living in Pennsylvania. He blogs at his own site, and has written a novel.

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15 Responses

  1. Michael Cain says:

    ThTh4: It’s always interesting to see if the Bureau of Reclamation uses this surplus in Lake Powell inflow for the original purpose: to allow the upper basin states to “bank” water for future-year obligated deliveries to the lower basin.Report

  2. Brandon Berg says:

    The problem is that none of this was consented to by Lacks or her family and they never received a dime from it.

    I realize that by pointing this out I am once again inviting knee-jerk smears from some of this site’s more toxic commenters, but while Lacks was not compensated for the tissue sample specifically, she was treated on a charity basis. I have to imagine that that was worth quite a few dimes. It was not standard practice at the time to request permission to study medical waste, so she was not explicitly asked to give permission to study it in exchange for free treatment, but I don’t think there’s any reasonable basis for doubt that she would have turned down such a trade. A priori, it was a pretty great deal for her.

    For all the grandstanding, I have yet to see anything resembling a coherent argument for her or her family having been wronged or cheated, or entitled to compensation in any way. She does not appear to have been harmed, she was treated for free, and all the time, expertise, and money invested to make her medical waste useful and valuable was done by other people. I can see throwing her family a modest sum of money as a simple gesture of goodwill, but the idea that they’re actually entitled to anything is pretty nuts, IMO.

    People really seem to want to shoehorn this into a pattern of white exploitation of black people, and while there was certainly a lot of that going on at various times in the past, the facts of this case as I understand them just don’t fit into that narrative in any way I can see.

    This is actually an issue of personal relevance to me, because my mother died at a relatively young age of an interesting disease, and before she died samples were taken for future study. Because this had become standard practice by then, she had to sign a consent form to give them permission to take samples, which of course she did because why wouldn’t she? Over a decade later, some progress is being made in treatment of this disease, and while I have no way of knowing, it’s certainly possible that her samples or iPSCs derived therefrom were used in some key studies. If I found out that they had, I would be happy about that, and the idea of demanding compensation for work other people did using my mother’s medical waste would never occur to me.

    You’re one of the only people I actually respect who I’ve seen signing on to this narrative. Can you explain to me why you think that this was a legitimate scandal and that her family is entitled to compensation?Report

    • Burt Likko in reply to Brandon Berg says:

      if you own nothing else, you own your own body. Taking someone else’s body without their permission is theft of property. Calling it “the practice at the time” is no defense to that. Neither is attaching the label “medical waste.”

      What is the fair compensation for something taken from you without your consent? The value of the thing that was taken. HeLa cells turned out to be very, very valuable.

      What happens to property rights when the holder of those rights dies? They pass to the person’s heirs.

      I can see an argument that it would not have been known prospectively that the cells would be quite so valuable as they are and therefore the value of compensation might not be so high. I don’t think that holds up to the facts here, but maybe.

      I see the equity of the argument that Lacks’ involuntary donation was offset by the value of the medical treatment she received as charity. But demanding value in exchange for charity renders it no longer charitable. And even allowing that there is an equitable offset does not tip the balance here, because that which was stolen in the process of dispensing the charity (for which value is retroactively demanded) was so valuable.Report

      • Burt Likko in reply to Burt Likko says:

        I hasten to add: that it is possible Lacks would have agreed to give the cells away, as have so many other patients, is also no defense. Your mother was asked in the other example you cited; her dignity as a human was respected in that moment. Henrietta Lacks was not afforded that same dignity.Report

        • Ben Sears in reply to Burt Likko says:

          I agree with Brandon. You own your body, but this was discard. She wasn’t saving it or planning to use it for another purpose. Someone did something good with it and I’d further Brandon’s comment by saying that not only would asking for compensation never occur to me, it’s unseemly.Report

          • Philip H in reply to Ben Sears says:

            You’re aren’t the family of a woman in a historically oppressed racial minority where there is well documented history of medical experimentation without consent. I suspect that might alter your consideration of what is and isn’t “seemly.”Report

            • LeeEsq in reply to Philip H says:

              The opposition to the Lacks settlement seems based on the idea that they don’t like the idea of Black people getting money from corporations for an unjust act of bodily theft. I’d postulate that if Henrietta Lacks was white, the usual suspects would not by protesting this settlement. There is just something at best very ungenerous and unhuman about saying the Lacks family should get nothing from the billions of profits derived from Henrietta Lacks cells.Report

      • LeeEsq in reply to Burt Likko says:

        BB hates the idea of people he views as lesser getting just compensation as opposed to the businessmen and scientists he truly admires. To him, Lacks’ family getting money is something that they don’t deserve.Report

        • Burt Likko in reply to LeeEsq says:

          The argument that the tissue was discard is a serious one. Discarded property belongs to no one and is subject to right of capture.

          But I don’t think we can really say she did discard the tissue. To discard something, to abandon property, requires some sort of act indicating abandonment. E.g., when I throw out an aluminum beer can, I put it in a dumpster. That indicates “I don’t want this anymore,” and the can becomes abandoned property. I’ve no objection (based in property rights) when someone else fishes that can out and pockets the recycling deposit.

          What did Ms. Lacks do that’s analogous to putting a can in a dumpster? No one told her what would happen with her body tissue, no one asked her if they could use it. They just took it.

          The issue of consent has other facets, too, but I thought exploring it from a property rights angle would resonate with our more libertarian commenters here; that’s an argument originating in their home turf.Report

          • LeeEsq in reply to Burt Likko says:

            I don’t see it as a serious issue at all. Mrs. Lacks died and her doctors noticed something unusual about her tissue. Without getting her consent before she died like you would with an organ donor or from her family, they decided to take/steal her tissue and use it. From this hundreds of millions of dollars were earned in medical research profits. That isn’t a discard at all. Lacks didn’t through her tissue in the garbage like a pair of shoes she no longer wanted.Report

    • I think that’s a very reasonable argument. My response would be that most of the time, these samples were not expected to last long, let alone became a major pillar of research. The lack of consent was wrong, but was something commonly done. But the ongoing use of it (and the obfuscation of the cell line’s origin) was an ongoing consent violation.Report

    • DensityDuck in reply to Brandon Berg says:

      “Can you explain to me why you think that this was a legitimate scandal and that her family is entitled to compensation?”

      Because it’s a cheap way to show the world that he’s An Ally, that he Cares, that he’s One Of The Good Ones.

      Note that it’s not as though there was some compensation that Lacks was denied. Neither you nor your heirs get to claim that you’re owed income as a result of material used in research; you’re asked to donate it, and if you refuse to consent it’s discarded. Lacks’s family is exploiting her just as much as any medical research supposedly has done.Report

  3. Brandon Berg says:

    ThTh3: I’m not sure that’s too good to be true, so much as a fairly predictable consequence of substantial reduction in energy intake and extensive weight loss. Remember that GLP-1 agonists were originally designed to be diabetes drugs, so it would be kind of weird if they didn’t reduce cardiovascular deaths.Report

  4. Burt Likko says:

    ThTh11: My apprehension that the movie would be a haigiography deterred me from seeing the film. Reviews assuring me it was nothing of the sort were helpful in persuading me to go anyway. I’m glad I went. The heavy mix of the score was the principal flaw in the movie; other than this there are only quibbles I’d raise with a remarkable biopic. The Oval Office meeting with Truman was for me particularly powerful.Report

  5. Jaybird says:

    Good review of Oppenheimer. I was inspired to spend time on Strauss’s Wikipedia page and, looking back, it seems fitting that it’s almost as much a movie about him as it is about Oppie.Report