Henrietta Lacks and property in body parts

By Legal Eagle

I have just finished reading The Immortal Life of Henrietta Lacks by Rebecca Skloot (2010). It raises all kinds of social, ethical, scientific and legal issues. I thought I’d explore them in this post. I don’t intend to offer any firm conclusions, but I would like to generate discussion about the kinds of conflicts medical research technology may give rise to.

The story in brief

Henrietta Lacks was a 31-year-old African American woman who attended Johns Hopkins Hospital for treatment of cervical cancer in 1951. She was a mother of five children, the youngest just four months old at the time of her diagnosis.

At that time, doctors were attempting to create a cell culture which would live outside the body, and had taken various cell samples from patients without their knowledge, but none of the samples had lived long outside the body. When the hospital operated on Henrietta, a sample of Henrietta’s cancerous cells was given to Dr George Gey who successfully cultured them. Henrietta’s consent was not sought, and nor (apparently) was she told of what had occurred. The cells became known as HeLa cell line (pronounced hee-lah). They reproduced at a furious rate, and are still widely used in scientific research to this day. They were the first ever successful cell line.

Dr Gey freely provided the cells to many researchers to advance scientific knowledge. The cells were instrumental in the development of the Salk polio vaccine, and were used to develop many other medical advances. They have helped our understanding of chromosomes, viruses and gene mapping.

Henrietta died some eight months after her diagnosis, in immense pain. The virulent cells which had so successfully produced a cell line had also spread throughout her body. One of the parts of the book which haunted me is the account of Henrietta begging her husband to make sure the children were cared for after her death. Unfortunately, the children had a very hard childhood. Her eldest daughter, who was apparently deaf, dumb and epileptic, died alone in the Hospital for the Negro Insane, and the other children had to live with various relatives while their father worked to keep them.

The family had no idea that Henrietta’s cells had been used as they were. Dr Gey did not profit from cultivating them, and apparently only thought to advance human knowlege, but the cell cultivation companies which sprang up thereafter profited immensely from the HeLa line. Meanwhile, the Lacks family lived in poverty, unable to afford medical insurance. They only became aware of what had happened to their mother’s cells in the 1970s when researchers contacted them to take blood tests. They did not really understand the full ramifications of what had happened.

The book describes the history of Henrietta’s life (insofar as Skloot could repiece it) and her interactions with the Lacks family in the present day (Henrietta’s three sons are still living, and Henrietta’s youngest daughter died in 2009). It also charts the history of medical research and cell research and changes in the law with regard to such research. I found it to be a gripping read. I recommend it.

Property in body parts

The book has made me think once again about the question of property in body parts. How far does someone (or someone’s family) have a right to profit from the use of a cell line derived from their body? There is a tension between utilitarian goals (the idea that free use of body parts has medical benefits for all, and should be encouraged) and individual justice (the idea that if something is derived from you, you ought to have some right to fruits generated from that thing). Then there is also the issue of consent, and what precisely one consents to when one undergoes a medical procedure, and whether people fully understand what they are consenting to.

Of course, in the case of the Lacks family, any enforceable legal rights are long gone. The statute of limitations has long run its course, and in any case, the general practice at that time was that it was unnecessary to seek consent from patients whose body parts were used for research. There were no statutes or other laws requiring consent to be sought or that people should be told of risks that might eventuate from participating in medical studies. If the Lacks have any remaining rights, they are moral rights.

Other unsavoury experiments indicate that it was generally regarded that African American people and other disadvantaged people (such as prison inmates) were fair game for medical research. The Tuskegee syphilis experiment was run by the US Public Health Service between 1932 and 1972. Researchers infected poor African American men with syphilis and attempted to prevent them from being treated so that the progression of the disease could be studied. The men were induced to enter the study by the promise of free health care. Many of the subjects died, and their children or wives were infected.

Skloot and others have set up The Henrietta Lacks Foundation for the benefit of families where members have made important contributions to scientific research without personally benefitting from those contributions, particularly those used in research without their knowledge or consent. And it seems that in the wake of Skloot’s book, Henrietta is getting the recognition she deserves.

Moore v Regents of the University of California

As Skloot’s book notes, and I have mentioned before at this blog, there is a famous US case called Moore v Regents of the University of California 793 P 2d 479, (1990) about property in body parts. It is directly on point with the Lacks case.

Moore was treated for leukaemia at the University of California Medical Centre. His spleen was removed as part of his medical treatment. His doctor and a researcher established a cell line (named Mo) with his spleen cells. The cancerous cells produced a particular protein in large quantities for an indefinite period. Moore continued to visit his doctor for some seven years to have samples taken from his body. The University of California patented the cell line in 1981 and, as part of that, the researchers made a profit of about $450,000. Moore sued the reseachers and the University, saying that he had not consented to the use of his cells in this way.

One of Moore’s claims was that the spleen cells were his property, and that by using them without his consent, the University had committed the tort of conversion. The California Court of Appeal held that the University had committed conversion.

On appeal, a majority of the Supreme Court of California said that they were not Moore’s property, as he had to establish either ownership or a right to possession. As Moore did not retain a right to possession after the cells were removed from him, he had to establish a right of ownership, but he failed to do so, because there was no analogy with the right to protect reputation, the Health and Safety Code severely restricted the use of excised cells and the patented cell lines were factually and legally distinct from Moore’s body – human skill and ingenuity had gone into developing the cell lines. However, the majority and the minority found that the University breached its fiduciary duty towards Moore (namely its duty not to profit at his expense without obtaining his consent).

Panelli J of the majority said the overriding policy considerations in ths case were (a) the protection of a patient’s right to make autonomous decisions, to be balanced against (b) the necessity of encouraging socially useful activity and medical research. Utilitarian considerations of social welfare militated against extending liability in conversion, as the patient’s right to make autonomous decisions was already protected by fiduciary law, and it was for the legislature to decide if proprietary rights should be extended to patients.

Two judges dissented, Broussard J and Mosk J. Mosk J’s judgment rebuts various arguments made by the majority. Of particular interest in the present discussion is the following passage:

In any event, in my view whatever merit the majority’s single policy consideration may have is outweighed by two contrary considerations, that is, poliies that are promoted by recognizing that every individual has a legally protectible porperty interest in his own body and its products. First, our soceity acknowledges a profound ethical imperative to respect the human body as the physical and temp0oral expression of the unique human persona. One manifestation of that respect is our prohibition against direct abuse of the body by torture or other forms of cruel or unusual punishment. Another is our prhibition against indirect abuse of the body by its economic expoloitation for the sole benefit of another person. The most abhorrent form of such exploitation, of course, was the institution of slavery. Lesser forms, such as indentured servitude or even debtor’s prison, have also disappeared. Yet their spectre haunts the laboratories and boardrooms of tody’s biotechnological research industrial complex. It arises whenever scientists or industrialists claim here, the right to appropriate and exploit a patient’s tissue for their sole economic benefit – the right, in other words, to freely mine or harvest valuable physical properties of the patient’s body…

A second policy consideration adds notions of equity to those of ethics. Our society values fundamental fairness in dealings between its members, and condemns the unjust enrichments of any member at the expense of another. This is particularly true when, as here, the parties are not in equal bargaining positions … In the case at bar, for example, the complaint alleges that the market for the kinds of proteins produced by the Mo cell line was predicted to exceed $3 billion by 1990. These profits are currently shared exclusively between the biotechnology industry and the universities that support that industry …

There is, however, a third party to the biotechnology enterprise – the patient who is the source of the blood or tissue from which all these profits are derived. While he may be a silent partner, his contribution to the venture is absolutely critical: as pointed out above, but for the cells of Moore’s body taken by defendants there would have been no Mo cell line at all. Yet defendants deny that Moore is entitled to any share whatever in the proceeds of this cell line. This is both inequitable and immoral … There will be such equitable sharing, if the courts recognize that the patient has a legally protected property interest in his own body and its products …

I am still not sure about the idea of body parts as property: I find it easier to accept the idea of dead body parts (as opposed to live cells) as property. But then again, if I found a valuable oil well which I could not exploit on my property, I would be entitled to sell it to someone who could.

Incidentally, Mosk J’s lines about slavery are particularly haunting if one thinks of Henrietta Lacks, because she was the descendant of slaves, and worked as a tobacco farmer from childhood on the planation where her forebears had been enslaved.

Thoughts

Something else keeps bothering me – all of the people whose cell lines are utilised in such technology are unwell, perhaps terminally unwell. It seems to me that if someone is deriving a benefit from someone else’s illness, then the ill person should be compensated in part for those societal benefits which we all derive from their illness (at least morally, if not legally). The HeLa cells which have proved so beneficial for the rest of the world were devastating for Henrietta Lacks and her family. Of course, Henrietta’s cells were the first to be exploited in this way, and there was no realisation how commercially valuable they were at the start, nor any notion at the time as to how doctors and researchers ought to deal with consent. But the case provides a useful illustration. It makes me think that perhaps we should have some kind of way of recognising the contribution of people like Henrietta Lacks, whose cells benefitted us all. I’m glad Skloot’s book may result in help for Henrietta’s family.

33 Comments

  1. Moz
    Posted October 31, 2011 at 3:08 pm | Permalink

    Mal Webb has a song called “Helen Lane” about her. I’ve also read the book and it’s a bit of a scary tale. Springs to mind when I read of other similar tales from the US that are happening now.

    There’s an aspect to the “social benefit” scale that I think you skip around – the three options are “patient control”, “public benefit”, and “private patent by big pharma”. Witness the breast cancer gene patent, for example. For me, I can see a legitimate tension between the first two, but when it comes to private profit vs rewarding the donor, I don’t see why the donor should not have a right to payment. If necessary, an inalienable one (to stop the current practice of slipping it into the insurance/care contract).

  2. Moz
    Posted October 31, 2011 at 3:09 pm | Permalink

    Sorry, link: http://malwebb.customer.netspace.net.au/hela.html

  3. AJ
    Posted October 31, 2011 at 3:15 pm | Permalink

    I don’t really see the problem in the Lacks’ case. Tuskegee was a obviously a horrible violation of human rights. It’s unfortunate that Lacks died and her family remained poor. But that would have been their fate whether someone had thought to take a biopsy of the tumour or not.

    I suppose it is sort of analogous to intellectual property. Except our genome is not our work, it is the product of millions of years of natural selection. Her cells may have been individual to her, but I think genes and human tissue as a category should be viewed as our shared natural heritage.

    I wouldn’t have a problem with damages derived from her lack of consent against the person who took the original biopsy. Though that’s probably no longer possible. But I definitely don’t think we need another rent placed on scientific progress.

  4. kvd
    Posted October 31, 2011 at 5:59 pm | Permalink

    This makes me think of usufruct, dunno why. Will go look it up to see if I got spelling right and if it is remotely on topic. I read that book a while back. A very interesting read.

  5. Posted October 31, 2011 at 6:12 pm | Permalink

    Usufruct is the right spelling – all about harvesting things. Fructus naturale (natural fruits) can be harvested IIRC.

  6. Posted October 31, 2011 at 7:54 pm | Permalink

    (1) It certainly, especially given that body parts from the molecular level up, are the product of nature and accident, something that doesn’t really qualify as invention.

    (2) It’s hard to draw a line between proteins produced by a cell (e.g. hair that has been cut and used in wigs, or, if you are a fan of Aargh Real Monsters, toenail clippings), abnormal tissue/products that have been removed from inside the body, and entire organs or persons. Biology is like that.

    (3) It actually should raise questions about the ownership of anything at all. Is there any difference between dispossession of cells with invasive techniques and dispossession of land with invasive soldiers, at any time since we started throwing rocks at each other? Would the Regents of UC and the HeLa profiteers be using something akin to the concept of adverse possession?

  7. TerjeP
    Posted October 31, 2011 at 8:28 pm | Permalink

    So long as there was consent for the removal of the cells then I don’t think the patient has any moral claim to something which would otherwise be disposed of, unless they thought to make such a claim as a condition of consent. It is as absurd as if I ask somebody to remove a tree from my garden and then later insisted on recompense because they made a chair from the tree instead of incinerating it.

    OT – I don’t wish to impose but in light of the Qantas saga an article on “protected industrial action” and what it means in legal terms would be appreciated. 🙂

  8. Posted November 1, 2011 at 4:48 am | Permalink

    Oh…employment law…I know nothin’ presently – never studied it or worked in it – guess I could go read up!

  9. Posted November 1, 2011 at 6:14 am | Permalink

    Property is control of a defined attribute. It generally arises when the gains from control are worth the cost thereof. Hence, in Harold Demetz’s famous analysis of the development of Amerindian property rights in beaver runs, once the Atlantic fur trade made beavers sufficiently valuable, a notion of beaver-run ownership developed.

    Conversely, foragers almost never develop a notion of property rights in land, since it is not worth the effort of control to them.

    If science is going to use cells, then there has to be some notion of legitimate control, so some notion of property. (Indeed, you cannot have a state without notions of property: of legitimate control of defined attributes by designated officials.)

    But, as DB points out, us biological beings eject bits of biology all the time. For example, if you discard something in public place with your DNA on it, no warrant is needed to test it. You have surrendered control of it.

    If a warrant requires you to provide swabs for testing DNA, we do not hold that the taken saliva is in any sense your property. No more than any other excretions.

    So, if reclaimed sewage is used as fertiliser, we do not hold that we have any right to be paid for that. (Pause here for “you don’t own sh*t”.)

    I fail to see how Henrietta Lacks cells are any different (with normal caveats about consent to procedures).

  10. Posted November 1, 2011 at 6:19 am | Permalink

    [email protected] I take it that “reasonable fee” is about protecting consent and boundaries; even if after the fact, so to speak.

  11. Posted November 1, 2011 at 8:38 am | Permalink

    [email protected] People rightfully have dominion over their body which goes beyond self-ownership (as I discuss here). So protecting boundaries and consent I am cool with.

    In the Moore case, that is the issue of purpose reflecting on status and identity. “Do you consent for your tissue to be used for human advancement?” is consenting to be a decent chap. “Do you consent for your tissue to make me really rich?” is consenting to be a schmuck.

    Contracts are bargains and bargains are all about status as agents and what you are signaling about the same. (That is why wages are ‘sticky’, for example: allowing the wage contract to be changed unilaterally within the set time period undermines one’s status as a bargaining agent.)

  12. Posted November 1, 2011 at 9:12 am | Permalink

    But, as DB points out, us biological beings eject bits of biology all the time. For example, if you discard something in public place with your DNA on it, no warrant is needed to test it. You have surrendered control of it.

    I think any property rights to biological material are going to be much more similar to intellectual property rights, such as copyright. I don’t think the moral distaste for the situation comes from someone keeping, testing, or using biological material; it comes from someone reproducing biological material that is directly related to a specific individual. If you give someone a copy of a book you’ve written, you might have surrendered control over the physical book but you still retain the exclusive rights to any reproduction.

    Arguably rights pertaining to biological information (genetics, etc) should be stronger than normal intellectual property rights in the same way the rights over ones body are stronger than those over property. They ought not to be bought or sold, and ought to require continual consent for use and be protected from unreasonable contractual obligation.

  13. Andrew Reynolds
    Posted November 1, 2011 at 9:24 am | Permalink

    I finished reading this about a month ago – and I’d agree, it is fascinating.
    Sorry, LE – but I can’t agree with you. On the direct question of “ownership” of body parts, particularly cancerous cells, I believe that they fit into the category of waste, as the current owner is paying to have them removed. This was one of the legal options discussed in the book.
    To me, unless they specifically claim some residual ownership right, perhaps through a contract, then they have no claim to what was formerly theirs as they have had it removed for (presumably) good reasons and they paid to have it removed.
    I can’t see how this fits into the category of profiting at someone else’s expense, as the very act of removal (if it was for good reasons) was their profit from the transaction. If the institution then uses the parts for something else then to me there is no doubt that they own it.

  14. derrida derider
    Posted November 1, 2011 at 9:46 am | Permalink

    Where was the loss to Helen Lacks and her family from this use of the cells? None at all – on the contrary, I bet her grandchildren all got the Sabin vaccine.

    The hero of this story is Dr Gey, not Helen Lacks. She may well have been a hero in other aspects of her life but she wasn’t in this one.

    We’ve more than enough rent-seeking litigation and stifling bureaucracy without inventing a new set of rights divorced from human utility. Control of a procedure on your own body is one thing – control of tissue bound for the incinerator another.

  15. Mel
    Posted November 1, 2011 at 11:59 am | Permalink

    derrida derider:

    “Where was the loss to Helen Lacks and her family from this use of the cells? None at all ”

    See LE’s @9 on reasonable fees. I think the reasonable fees argument is fair and just and that some modest fee should be payable to Lacks’ heirs on that basis.

    I also note in passing that according to a Harvard Medical School study, about 45,000 Americans die each year because they lack health insurance. Obviously poor black people are very well represented in this group.

    Even if there was no legal obligation I still think there is possibly some moral obligation on the companies that have made big money on the back Lacks’s cells to exclude her heirs from this rather unsavoury exercise in libertarian eugenics.

  16. TerjeP
    Posted November 1, 2011 at 1:52 pm | Permalink

    I don’t see any moral obligation so long as the cells were surrendered voluntarily. If I go to the hairdressers and they make a wig out of my cuttings then good luck to them. If I sell or pay for the removal of garden clippings and they make mulch then so be it. I don’t think you own what you willingly give away even if it turns out that what you gave away had more value than you antipated. In the Moore case the doctor was clearly sneaky but they should not be a crime. However if he falsely led Moore to believe that there was a benefit to Moore in having the procedure when there wasn’t then that is essentially fraud.

  17. Ripples
    Posted November 1, 2011 at 2:52 pm | Permalink

    I have to consider a few competing factors in this type of issue. The first is always to be informed consent to take something from a person’s body. Ordinarily I would expect a person would consent to the removal of the cancer as a matter of course.

    Once excised from the person there is the question as to whether there is property ion the excised bit. I tend to fall on the side of no ownership as it is excised for the purpose of disposal.

    If the excising of biological materials were done with an intention of sale of the materials this would be a different consideration. I could imagine blood being bought and sold and thus there would be an obligation to pay the donor as it is intended as a transaction from the outset.

    I think property in the person’s biological material is problematic but I would have to suggest that I would feel I had an interest in my body and anything made from it. I used to donate blood as I felt it was giving to the community but should I have found the blood bank

    The issue here is that the transaction is not usually intended at the outset. I would suspect the researchers had no idea the cell cultures would work when they initially cultured then. Thus it would be reasonable to expect that the researcher could not know it would work.

    Entering into license agreements would be difficult to work with as you would never know if a profit were to be made.

    Alternately on a social benefit scale there is the opportunity for a person who is the source of a cell culture to try and hold out for the best deal and potentially deny the use the cells for profit reasons.

    An option that could be considered is a set reasonable fee that any cell culture (I use cell culture as the example though it may be expanded to another line of research). Such fee could be along the lines of a license agreement similar to a copyright license where a percentage of profit is returnable to the donor.

    This then allows social benefit by removing profiteering and also makes those who profit share it with the donor. This could meet the needs of society to access cures and meet the rights of the individual to profit from their own body.

    How we do it is of course something that will make for an interesting argument.

  18. Posted November 1, 2011 at 3:10 pm | Permalink

    I don’t see any moral obligation so long as the cells were surrendered voluntarily.

    Are you perfectly OK with the garbage company to go through all the paper work you dispose off, systematically compile a database of everything in your life and sell it off to the highest bidder (or simply publicise all the details)?

  19. Posted November 1, 2011 at 5:14 pm | Permalink

    [email protected]

    I also note in passing that according to a Harvard Medical School study, about 45,000 Americans die each year because they lack health insurance. Obviously poor black people are very well represented in this group.

    Not quite obviously as one might think, given people over 65 or with certain disabilities are covered by Medicare and low income people are often covered by Medicaid. US medicine is a complicated mess.

  20. Posted November 1, 2011 at 5:15 pm | Permalink

    [email protected] That is an invasion of privacy issue, rather than a property rights one, surely.

  21. derrida derider
    Posted November 1, 2011 at 6:45 pm | Permalink

    But Ripples, that the US is full of disadvantaged people is surely irrelevant to this issue. If the cells had originated with Nelson Rockefeller how would that alter your position?

    After all, if we invent a principle that you have a right to share in the indirect profits from an inadvertent gift that cost you nothing then in practice it is far more likely that the lawyered-up heirs of Rockefeller will benefit than the poor heirs of Lacks. And the Dr Geys of this world and his beneficiaries (ie you and me) will be the losers.

  22. Mel
    Posted November 1, 2011 at 7:39 pm | Permalink

    Lorenzo @21.

    Many of the uninsured are the working poor and blacks are overrepresented in that group. Study is here.

  23. Mel
    Posted November 1, 2011 at 8:00 pm | Permalink

    Hmmm. I wonder if I could demand a reasonable fee from my neighbour if I could prove that his bees were spending most of their time gathering nectar from my gum trees? 🙂

  24. TerjeP
    Posted November 2, 2011 at 2:13 am | Permalink

    [email protected] – If the doctor took my cells and then after testing them announced to the world without my permission that I have some rare disease that might be an equivalent analogy. As Lorenzo says that would be a privacy issue not a property issue.

  25. Patrick
    Posted November 2, 2011 at 8:28 am | Permalink

    I actually think LE has mixed up her utilitarianism; the utilitarian would surely support strong personal property rights over one’s self – consider organ transplants for example.

    But in the particular case I think there are pretty feeble grounds for compensation over than: she’s poor they are big businesses. I expect that in the future hospitals will try to impose standard terms surrending all potential property rights other than attribution.

  26. Posted November 2, 2011 at 9:18 am | Permalink

    TerjeP, I would regard doctors/scientists having access to my genetic/biological material without my permission, or using it beyond the permission given, as a breach of my privacy.

  27. Posted November 2, 2011 at 2:06 pm | Permalink

    [email protected] As long as he can charge for pollination services: such trading is done in the US: see the fable of the bees (pdf).

  28. Mel
    Posted November 2, 2011 at 3:02 pm | Permalink

    [email protected]:

    “As long as he can charge for pollination services.”

    Wrong in my case, since the honeybee is an unwanted pest once it crosses over to my side of the fence and causes a very significant reduction in environmental values. I really can’t wait to we get Varroa destructor. Hopefully a good samaritan will sneak it into the country if it does not arrive of its own accord soon.

  29. kvd
    Posted November 2, 2011 at 3:17 pm | Permalink

    [email protected] sounds like a good solution for your problem. btw how’s your cane toad colony going?

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