In hundreds of research labs around the world, including within my own Department, scientists carry out experiments using a human cell line known as “HeLa”. Most cells die after a defined period of time, but mutations within the HeLa cells have allowed them to continue dividing outside of these normal contraints, and as such they are said to be “immortal”. The original tissue sample from which HeLa cells are derived was taken from the cancerous cervix of an African-American woman Henrietta Lacks (the name of the cell line being an abbreviation of her name).
Henrietta died in 1951, shortly after the crucial tissue had been collected and with no knowledge of the importance her cells were to have. Author Rebecca Skloot struggled for many years to persuade Henrietta’s family to participate in her project. Their reticence to be involved ties in with one of the key bioethical themes that emerge from the book.
The main events of the story took place more than half a century ago in a time that was culturally and scientifically far removed from the present day. Nevertheless, I think there are several ethical lessons with contemporary relevance.
Firstly, the commercial exploitation of human tissue. When it came to light that companies were making huge profits based on cells derived from HeLa at the same time that Henrietta’s relatives lived in abject poverty, they were understandably aggrieved. The Johns Hopkins hospital (where Henrietta was treated), Howard Jones (her gynecologist) and George Gey (who cultured the first HeLa cells) argue that in the spirit of the age they had given away the cells and have made no material profit themselves from Henrietta’s cells.
This is not, however, the only example of situations where human tissue has been commercialised and there are other instances where scientists and their institution have certainly been major beneficiaries. In a celebrated test case Moore v Regents of University of California (1990), the Californian Supreme Court rules that John Moore had no right to profit from a cell line derived from material he had “discarded” during his treatment at UCLA during the 1970s.
Even today, forms used for consenting to treatment usually include standard phrases confirming that any material taken is a “gift” and that the patient understands that they will not benefit financially if the research leads to the development of new tests or treatments (see, for example, guidelines from the Medical Research Council and this form from University College London).
This leads to the second ethical issue, that of informed consent. Contemporary patients are at least informed about the procedures that they will be receiving. No such luxury was afforded half a century ago. This is pertinent not only to Henrietta, but also to those involved in subsequent trials of her cells.
The conduct of clinical trials is a third issue. The HeLa cells were, of course, cancerous in origin. As their use increased in research laboratories, virologist Chester Southam was worried that scientists might ‘catch’ cancer if they inhaled these cells. In order to investigating the potential of HeLa cells to spread (metastasise) through the body, Southam recruited healthy prisoners at an Ohio prison.
It seems that the recruits had at least a partial knowledge of the risks since footage exists of prisoners rationalising their involvement as recompense for the harm they had done to society in general or to specific girls (see The Way of All Flesh, below). It is however questionable whether such vulnerable individuals ought to have been invited to participate in this way. It is certainly the case that research subjects in the notorious Tuskegee Institute experiments in which sharecroppers were deliberately infected with syphilis in order to study progression of the disease were not afforded even this luxury.
Finally, there are issues relating to research ethics and the need to confirm that experiments are conducted safely and, as far as is possible, on the correct materials. The very feature that makes HeLa cells useful for research – their prodigious ability to divide – has led at various times to problems with contamination. Scientists carrying out research on diverse cell lines have in all innocence been working on HeLa rather than the cells they thought they were studying because a stray HeLa cell can massively outcompete other cells (it is notable in this list of contaminated cell lines how many are, in fact, HeLa).
In the early days of cell research, when basic principles of division were being established, misidentification of cells was perhaps not an absolute disaster. However, as research move increasingly into an understanding of specific cell types (e.g. in order to develop much more targeted anti- cancer therapies) such mistakes become far more serious. In a 2008 study by Rebecca Schweppe and colleagues, for example, nearly half of the “human thyroid cancer” cell lines they tested were actually not what they were supposed to be, and in several cases they were not thyroid cells at all. It is therefore paramount that research scientists are careful to avoid contamination and that they conduct periodic checks to ensure that their materials are still correctly identified (this is becoming much easier as DNA sequencing becomes quicker and cheaper).
The Way of All Flesh
In addition to Rebecca Skloot’s book (available in paperback from today), I would also recommend a 1997 documentary The Way of All Flesh. I am delighted that film maker Adam Curtis has made the hour-long programme available as a streamed video on his blog page. The documentary includes archive footage and highlights several of the ethical issues raised above and there would be definite value from asking students to watch the programme.
At 00:10:45 the programme explains that George Gey kept the existence of the cells a secret from her family (using the name Helen Lane as the source of HeLa), and at 00:48:45 to 00:49:15 (or onto 00:49:55 if time allows) the family reveal that it was not until 1976 when further researchers came seeking their blood samples that they discovered what had been going on. When they do, questions of ownership and permission are at the forefront of their thinking.
From 00:13:30 to 00:15:20 there is a description of the tests carried out at Ohio State Prison, including interviews with some of the prisoners about why they were involved.
The story about contamination plays a major part in the film including: Stanley Gartler’s original concern that other cell lines were being outgrown by HeLa (00:21:37 to 00:22:54, or to 00:24:30 or 00:24:48); Walter Nelson-Rees’ molecular confirmation of this fear (00:27:03 to 00:28:58, or to 00:30:54 or 00:32:46); and the deflating of Russian scientific hubris when their discovery of human cancer viruses turned out to be HeLa contamination (00:33:20 to 00:37:34, or 00:38:30, or 00:39:44).
There is also an interesting discussion of Henry Harris’ work developing hybrids of Henrietta’s cells with mouse cells as a tool for identifying the chromosomal location of various genes.