Henrietta Lacks and her immortal cells: Lacks estate sues pharmaceutical company
13 October 2021
Henrietta Lacks was a young Black woman who in 1951 was diagnosed with a particularly agressive form of cervical cancer. Her treating doctors at the Johns Hopkins hospital took a sample from the tumour and that was the birth of “HeLa” – an “immortal” line of fast-replicating cells that have been reproduced every since, used in scientific and medical innovations including the development of the polio vaccine, infertility research and even the early research into a vaccine against Covid19. The HeLa cell line was in essence the first time human cells could be successfully cloned and it has been in use continually for research that has touched nearly every realm of medicine.
In October 2021, her estate filed suit against Thermo Fisher, the pharmaceutical company that bought the cells from the hospital. Her family, represented by Ben Crump, the attorney who represented the family of George Floyd in 2020, is asking the company to pay back the full profits gained over 70 years of using her cells without consent. This is the US remedy of “disgorgement of profits”, which essentially involves the transfer of all the company’s patents and profits from the HeLa line to the Lacks estate. In essence, disgorgement removes the incentive to unjustly enrich yourself at another’s expense.
The problem with this remedy is it is dependent on the enrichment being based on the other person’s property. In US law, as in the UK, there is no property in the body. In fact US law is silent on ownership of bodily resources. The only statute that governs this subject is the 1984 National Organ Transplant Act which bans the sale of all organs including kidneys. The ban only extends to the sale of kidneys for transplantation; there is no ban on the sale of kidneys for research and experimentation.
In this country the Human Tissue Act 2004 was introduced following the scandal of Bristol Royal Infirmary and Alder Hey Hospital in Liverpool retaining the organs of babies who had died without the parents’ consent. Retention of body parts and organs from dead children without the parents’ consent was in fact widespread in the UK at the time. As the Chief Medical Officer pointed out there have been many occasions where the study of tissue after death have led to discoveries in medical science which have resulted in the savings of lives and the relief of suffering, particularly in the field of cancer research.
The UK Human Genetics Commission said, in 2006, that
the need to restore public trust in genetic research and the collection of human biological samples must not be bought at the cost of severely hampering research into fatal diseases
Even the Human Tissue Act, which covers cells, does not cover cell lines, since it does not extend to any human material created outside the body. Or more precisely the Act doesn’t directly address the question of whether a person owns bodily material once it has been removed. In fact in law the person does not own bodily material taken from him or her during medical procedure. Section 39 of the Act refers to human material that has become property by the application of human skill – arguably that of the hospital whose specialists have worked on the cells to become a productive line.
Furthermore the Act does not require consent if the bodily material is kept for a scheduled purpose such as “education, training and audit”. Whether this exclusion includes research is a vexed question. But it is clear that the use of raw human material for these purposes is seen as intrinsic to the health of the nation. The 2004 Act provides that a High Court judge can order that appropriate consent can be deemed “for research purposes in connection with disorders, or the functioning of the body”. That pretty much covers everything involved in medical research.
Turning back to the United States, the case of Moore v Regents of the University of California (Cal 1990) would appear to be on all fours with the Lacks Estate’s case against Thermo Fisher.
John Moore, suffering from hairy cell leukaemia, had his spleen removed. His treating doctor discovered that white cells from this spleen produced proteins with potentially beneficial properties. Dr Golde developed a cell line from the spleen, which he eventually sold for 15 million dollars. The products produced as a result were said to be worth several billion dollars.
Moore brought an action based on conversion, breach of fiduciary duty, and informed consent. The Californian Supreme Court rejected the conversion claim. There were no rights of property in the body, said the court; this would hinder medical research by restricting access to raw materials and lead to a “litigation lottery”. For the court, the key value was promoting scientific innovation. They were not so concerned with Moore’s personhood. Allowing patients any control over excised tissues would, the court feared, bog down doctors in expensive and lengthy negotiations. The prospect of patients shopping around to find who would offer them the best price for the bodily parts or products was not an attractive one.
There are technical difficulties in regarding bodies as property. Bodies are not transferable or divisible. It is wrong to think that just because no one else owns our bodies, we must. Anyway we don’t want control rights or responsibility over the vast majority of our waste products or bodily material that is dropped off. The doctrine of abandonment deals with these problems.
If the Californian court had decided that Moore had ownership of his cell line that would mean that he had a claim to all the money produced by his property. Valuable research into stem cell lines and DNA will be hindered if there is a a danger of patients claiming an interest in the products.
On the other hand, as technology develops, and it becomes easier to add, extract and alter the genetic basis of our bodies, not just organs, so this question of ownership will only increase in complexity.