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.
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.