My first lab practical as a second year NatSci was ordinary in every sense but one. It started like every other practical I’ve been to: I arrived slightly late as usual, dug out my lab coat, and began to skim the handout to see how quickly I could get everything done and get out of there. This time, however, there was a break in my usual routine as I stopped in surprise at one specific word in the handout. It was a short, innocuous-looking word mentioned only in passing, but having come across it before I was aware of its iceberg-proportions. The word was “HeLa”.
At first glance, it might seem like a typical science acronym, another seemingly random collection of letters to add to the dictionary of apparent gibberish in the Bio NatSci course. But an impressive array of scientific breakthroughs in disciplines ranging from disease to reproduction can all be attributed to HeLa cells. On the flipside, so can a myriad of ethical questions in medical research. The origin of the HeLa cell line is a can of worms that touches on issues of race, class, and autonomy – issues glossed over not only in this practical but also in the majority of science teaching and research.
"I first came across HeLa cells in Rebecca Skloot's book The Immortal Life of Henrietta Lacks."
I first came across HeLa cells in Rebecca Skloot's book The Immortal Life of Henrietta Lacks. If you’re more observant than me, you might not need prompting to notice that “HeLa” comes from the first letters of Lacks' first and last name. That’s because the HeLa line was derived from cells taken from Lacks by doctors in 1951 as a sample of cancer that would eventual kill her later that year.
The cells had the unusual ability to reproduce indefinitely without dying. In fact, they still have this ability – HeLa cells today are all descendants of the original sample. This immortality is what makes the cells so incredibly useful in research, not least because it eliminates the need to constantly source cells and therefore ensures consistency between experiments.
But there’s a catch. HeLa cells were taken from Lacks without her knowledge and the cell line was developed, by doctor George Otto Gey, without her consent. Even Lacks' family did not learn of her 'immortality' until more than twenty years after her death. Skloot’s book charts the implications of these actions. Though neither Lacks nor her family gave permission to harvest the cells, at that time permission was not considered necessary for such a procedure because material left over from medical interventions was the property of the medical institution.
As Skloot points out, this explanation is complicated by the balances of power in the interactions between Lacks as a poor African American woman and the white, typically middle-class doctors at Johns Hopkins - the only hospital in the area that treated black patients. This issue also raises a broader question about whether we own our own tissues once removed. Do we have any right to influence how such material might be used? Many people would think so, but it is surprisingly difficult to justify that position. After all, we tend not to feel particularly attached to the millions of skin cells shed daily.
"Neither Lacks nor her family were compensated for the use of her cells."
There is also the issue of money. Neither Lacks nor her family were compensated for the use of her cells. Though it was the work of scientists developing the cell line and using it in research that led to the breakthroughs – and in some cases profit – the impression remains that some compensation should be given. It seems unfair that the family remains relatively poor despite the massive amount of money Lack's cells were worth to the world. Yet Gey freely donated the HeLa cells along with the tools his lab developed. He never patented the cells in their original form, though they were later commercialised.
The case of HeLa cells isn’t a clear-cut situation. For every consideration, there is an array of counter-points, and the issues have not gone away. Now, with a film of The Immortal Life on Henrietta Lacks out recently on HBO, the story is coming more into public attention. This is most definitely a good thing, in my opinion, but we need to go further.
Teaching the history of the tools, techniques, and materials we use is important to avoid repeating mistakes of the past. For example, recently the HeLa genome was sequenced and published without the Lacks family’s knowledge. With the implication that HeLa genome data would reveal personal genome information about closely related family members, the authors voluntarily withheld access to the sequence data while the Lacks family's privacy concerns were being addressed. While this response is an improvement, publishing this sensitive information without the Lack’s involvement initially has been judged irresponsible.
Scientific research exists within a social context; ignoring the factors that influenced past work and the social implications of the future research are to the detriment of science’s relationship with society. Routinely teaching awareness of these issues alongside the science would be a significant step towards improvement. That Michaelmas practical would have only taken an extra five minutes if the demonstrators had pointed out the origins of HeLa cells, acknowledged that there were complex issues involved, and suggested some reading to gain a fuller understanding. Given the advantages of doing so, I don’t think that’s too much to ask
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