I finally got a chance to read the Immortal Life of Henrietta Lacks by Rebecca Skloot and overall, I thought it was great. The book details the origins of the ubiquitous HeLa cell line, its uses in major scientific discoveries (such as the development of the polio vaccine), and the controversies surrounding the ethics of using human tissues in research.
HeLa cells are a cell line derived from the cervical cancer of a poor black woman named Henrietta Lacks in the 1950s. They’re so remarkable because they represented a triumph in cell culture after years of failed attempts at making an immortalized cell line. In fact, they grew so well that they were found to contaminate cultures of other cell types!
At its core, The Immortal Life… uses an extreme example to serve as a vehicle to start talking about the ethical issues surrounding the use of human tissues in scientific research. For instance, why do we even know Henrietta’s name?? Apparently initial attempts were made to keep her name hidden from the media, with the fake name ‘Helen Lane’ (which still persists here and there), but ultimately her name was somehow leaked. While it may seem like this may be a vestige of the past, blamed on the norm of the day, I had a funny moment the other day. In an article about using induced pluripotent cells as a model for disease, I read as the journalist described meeting with two elderly sisters with Huntington’s who donated skin tissue to the study but declined to give their names. How did the journalist get their names to conduct the interview in the first place??
This anecdote brings me to the first ethical question this book brought up for me – if you donated tissues to a study would you want to be contacted at a later date?
Prior to reading this, I’d also not given much thought to the historical role of poor, disadvantaged, often black communities in medical research and the distrust that this dubious relationship has created. In Henrietta’s case, it was the general practice at the time for public hospitals to remove tissues from black patients without permission in exchange for the free medical services provided. This lead to rumours among the black community in Baltimore that Johns Hopkins actually kidnapped people from the street. Further reinforcing this distrust are incidents like Tuskegee in which patients with syphilis were denied treatment in order to follow the course of infection, or the lead abatement studies in Baltimore in which landlords were encouraged to rent houses known to be contaminated with lead to families in order to test the effectiveness of lead abatement and the effect of lead on children.
While these are all more clear-cut cases of mistreatment, it speaks to the overall issue of consent. How much should patients be told about how their tissues may be used? Should patients be able to choose the ways in which their tissues are used?
Throughout the book, the issue of compensation for the family is also often brought up. To give a bit more background here, the family certainly did go through some hardships that might not immediately be apparent. For instance, having not been aware that their mother’s cells had been taken in the first place, years later Henrietta’s children were contacted by researchers seeking tissue samples from them. Perhaps attempts were made to inform the family, perhaps not. Either way, the family was left with the mistaken belief that the researchers were testing them to determine if they had the same cancer as their mother and were left waiting with no answers. From the family’s perspective, scientists regularly contacted them seeking information about Henrietta without ever explaining what had been done with her cells. In fact, for a while her children believed the Henrietta had been cloned!
This distress has lead to discussion as to whether the family deserves compensation for Henrietta’s contribution to science. I’d argue, as I think most in the scientific community would, that this is not possible for the simple reason that it would set a dangerous precedent. While the general public may imagine ‘evil’ drug companies making millions off such tissues, the truth is that these tissues are also used in academic research labs. With dwindling research money available and studies that often involve hundreds or thousands of patients, the system could not support a pay-for-tissue approach. Finally, there’s that tired old argument that her tissues were collected according to the standards at the time.
All in all, I’d say that The Immortal of Henrietta Lacks is worth the read for both scientists and lay people. So pick it up and enjoy!