Bioethics

Should You Be Compensated for Your Medical Waste?

Especially if it turns out to be valuable?

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The right answer is: No. Why bring this issue up? HBO will be showing a movie based on the 2010 bestseller The Immortal Life of Henrietta Lacks tomorrow starring Oprah Winfrey. In 1951, black Baltimorean Henrietta Lacks had surgery to remove a cervical cancer tumor. Her physician took some cells from the tumor which he turned into the first immortal line human cell line. The HeLa cell line has been subsequently used in thousands of biomedical research projects. Lacks died later that year of her cancer, and her family was not told about the HeLa cell line.

One of the central themes of the book was whether or not Lacks' physician should have asked for consent and provided compensation for the use of her cells. Spurred by the controversy engendered by the book, the U.S. Department of Health and Human Services proposed revisions to the Common Rule that protects people who volunteer for federally funded research studies. The proposed revisions would have substantially increased the burden on researchers with regard to obtaining consent from patients for the subsequent use of their medical wastes, uh, biospecimens.

I am happy to report that in their op/ed, "Science Needs Your Cells," in today's New York Times two bioethicists agree with me that such requirements are largely useless and would substantially slow down medical progress. From the op/ed:

First, no one is taking biospecimens from patients' bodies without their permission. Patients have consented to the clinical procedure as important to their medical care. What harm could come from using leftover materials, which would otherwise be thrown away, for research?

Perhaps we should be concerned about risks to a patient's privacy, but that is why we remove the identifying information. Although researchers have shown that it is possible to "de-anonymize" specimens — using clues to link them back to individuals — there have been no reports of anyone doing this for nefarious reasons. And even if there were, the answer would be to sanction the culprit through fines or criminal charges, not to make it harder for researchers to get these samples in the first place.

What is left, then, is our claim to autonomy: Many of us intuitively feel we should be able to control how biospecimens derived from our bodies are used. But leftover biospecimens are just medical waste to most of us, as we lack the expertise to imbue them with scientific value. Nor have we done anything to make them valuable, other than being born with a particular genetic variant or afflicted with a particular malignancy.

This is why calls to pay patients are misplaced. In addition, unlike HeLa, in which one patient's biospecimens led to dramatic advancements, most developments come from studying materials from many patients — each biospecimen contributes only marginally to the result.

These relatively weak claims to control and compensation do not justify the demands more restrictions would place on biospecimen research. Hindering this research is worrisome because its benefits are so great. Among many examples, they include the identification of mutations in tumors (lung, skin and others) that can be targeted with drugs that markedly improve quality of life and survival.

Requiring consent might not seem like a big deal. But it is. Consent might require tracking patients down later, whenever a study is proposed, which can be difficult or impossible. Alternately, it might involve asking patients to agree generally to any future research at the time blood is drawn or a biopsy is taken. Either way, it can be a costly, bureaucratic headache. Which patients said yes, which said no, and to what, exactly?

They are correct. And the good news is that most the proposed consent revisions to the Common Rule have been dropped.

With regard to compensation, in her Times' interview about the movie Oprah Winfrey notes that some Lacks family members had sought a payment of $10 million from her and HBO.

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  1. The Immortal Life of Henrietta Lacks

    I’ve seen the trailer for this and you’d think they had grabbed her in an alley and illegally removed a couple of kidneys the way the emotion is played out on screen.

    I don’t have a strong opinion on the subject matter, but I can maybe see some problems about being notified if in our sci-fi future world, your physician removes a few cells and starts making clones of you.

  2. I am happy to report that in their op/ed, “Science Needs Your Cells,” in today’s New York Times two bioethicists agree with me

    Ron Bailey is a known body thief.

  3. How about knocking a little off the medical bill.

    1. Obamacare did that for all of us.

      1. Sure, once you meet the ridiculous deductible.

  4. Libertarians are good at nothing if not seeing the difference between ethics and law.

    I’m not sure Lacks (or her family) should have been compensated, but I’m also not sure her consent shouldn’t have been obtained.

    It seems to me that the scientific advances that were made using HeLa cells weren’t made because of the cells themselves. The ingenuity, creativity, and work that was done to develop treatments and therapies was due to the efforts of researchers working on those cells–not by Lacks. So, even IF IF IF her cells were effectively stolen from her, that wouldn’t entitle her to a share of those researchers’ proceeds. If you steal my pickaxe and use it to find gold, that doesn’t mean I own your goldmine. Legally, that should just mean you need to compensate me for the value of the pickaxe you stole.

    From an ethical standpoint, the needs of the many really don’t outweigh the superstitions of an individual. Our ethical obligation to obtain other people’s consent doesn’t disappear just because we’re dealing with stupid people. A right is the right to make choices and property rights are the right to make choices about how our property is used. If self-ownership is a real thing and individuals own themselves, then surely they own their own cells. Ethically, I don’t see how we get around obtaining consent–even if it’s buried in with all the other conditions of admission when patients are admitted to a hospital.

    1. KS: The specific sort of consent that was being considered with the Common Rule revisions was that each subject would have to be contacted and give consent each time his/her biospecimen was being used in a different bit of research. I agree broad consent should be obtained, basically in the form of: “Do you (patient/subject) consent to having your medical waste/biospecimen used in research?” If patient/subject refuses, then the physician/researcher must throw it out.

    2. KS: The specific sort of consent that was being considered with the Common Rule revisions was that each subject would have to be contacted and give consent each time his/her biospecimen was being used in a different bit of research. I agree broad consent should be obtained, basically in the form of: “Do you (patient/subject) consent to having your medical waste/biospecimen used in research?” If patient/subject refuses, then the physician/researcher must throw it out.

      1. Yes, so why wasn’t a proposed revision to the Common Rule made that would be broad enough to require such agreements? Why do the only choices in law have to be (1) you must sign away all your rights or none, or (2) the law has to specify the exact format of such agreements, so you have to renegotiate every subsequent use? Why can’t it simply say specimens are subject to whatever terms the donor & recipient agree to?no more, no less?

        What the heck, it’s the same with organ & egg donations, where the only possibilities that seem to be on the table are that (1) the donor gets nothing, or (2) the donor can get only certain compensation of a type & amount capped by law. Or like it was with divorce, which went from divorces being allowed only for statutory causes, to no-fault regimes where divorce is unilateral with judicially enforced compensation rather than damages?

    3. If your entire venture is predicated on my pick ax then I am entitled to more than just the pick ax. A capital owner is entitled to the results of the uses of that capital even if it is someone else’s labor that is imparted into it. That’s how businesses operate. She provided the capital without consent or compensation. The empire built upon that is essentially fruit of a poison tree. It is hard to retroactively decide fair compensation, sure. But it should exist.

      To me, the question is “Do we compensate based on what she would have asked for in return for usage rights at the time consent should have been obtained, which may have been zero?” Or… “Do we compensate based on what she would have asked for if given an indication of their perceived future value?”

      It may be sketchy… But still not immoral nor should it be illegal to consider this as a story of “Hey… you gonna use that?” And that otherwise trash I happen to turn into gold. You said “OK”… sucks to be you now.

      1. A stolen pickaxe may be used to mine gold, or used to kill someone. If the latter, do I share in the punishment? I hope not! If the former, do I share in the rewards? No – but I should be compensated for any loss caused by not having the pickaxe that was stolen (including the value of the axe, or wear and tear on it, as appropriate).

        As for compensation, now you get into really tricky waters – because there’s no guarantee that any particular lump of cells will lead to any sort of commercially viable breakthrough, or even to contribute in some small way to such a breakthrough. Very few, if any, companies would take that risk – or would pay so little that people might not accept the offer. Either condition would put a crimp in the innovation pipeline, for so little benefit as to be a negative.

        1. The issue regarding murder is a good point.

          Is there a way to distinguish between post theft ventures that would solicit consent (digging gold for example) and things that someone would not reasonably consent to (commission of a murder)?

          If you steal lumber from me and build a house… who’s house is it?

  5. Should You Be Compensated for Your Medical Waste?

    Aren’t you being compensated through having it disposed of? I mean, if you have to cut off my toes because of frostbite, I don’t want to wake up to you handing me a baggy of decaying toes and telling me to find a trashcan or something.

    But yes. But no. But yes.

    Personally, you should maybe learn what that waste is worth and then negotiate with your service provider for a discount if its exceptionally valuable.

    1. Perhaps TMI, I asked that my dentist return to me my wisdom tooth after he pulled it. It’s on my desk. 🙂

      1. I think that’s a lot more common with teeth than rotten toes. My dentist asked if I wanted my teeth when they got pulled.

        If I had a digit amputated, I think I might like to keep it around in a jar of formaldehyde or something too, come to think of it.

      2. See? The free market *does* work.

      3. Re: Tooth.

        Did you at least embed it in acrylic? Or is sort of just sitting there next to the penholder/nameplate collecting dust? Just out of direct view but ready to catch some intern you’re interviewing off guard if she leans on the arm of the chair?

      4. I had to get a tooth pulled and my dentist asked if she could send it to her son (who was studying dentistry, and could always use more teeth to work with).

        Re this story generally, I thought that at least some of the sample were collected not for purposes of treatment or analysis of the patient’s medical condition, but for the purposes of research. Which puts a different complexion on the matter, it’s not waste, it was taken from her body for the purpose of research. There was I think an episode of L.A. Law once which pushed the hypo further, the patient had been called in to multiple appointments which (unbeknownst to her) were not for the purposes of treating her, but for medical research purposes.

  6. BOO! “Medical waste” is stuff that hits the incinerator, if there’s money to be made on it, it’s recyclables. If the tissue can be sold, I’ll be the one doing the selling thank you very much. I can’t sell one of my perfectly healthy kidneys but if you remove it, you can sell it? I don’t think so.

    I one time had to take a piss test and had to cause a scene with a higher-up over the issue of what was going to happen to my piss and the test results after they verified I only had the socially-acceptable drugs in my system and the lab guy administering the test couldn’t tell me for sure that they weren’t sending the stuff to Bill Gates and the CIA and the Illuminati or whoever the hell it is that’s collecting every scrap of information they can on every human being on the planet. I’m sure there’s valuable information in that cup and somebody’s willing to pay for it, I do not consent to the sale.

  7. I would have been seriously pissed if I didn’t get my wisdom tooth to take home with me.

  8. They should have gotten her consent (I sort of thought they had, but it’s been a long time since I read much about this story). I don’t think her relatives have any legitimate claim on compensation.

    In general, I think people should be paid for valuable parts of their body. It’s absurd that everyone except the actual owner of the body gets to make money on the deal. You should also be able to bequeath your body to your heirs so they can sell it if it’s worth anything.

  9. If corporations exuded medical waste, you can bet commenters here would assert the primacy of property rights.

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