I recently finished reading The Immortal Life of Henrietta Lacks by Rebecca Skloot, as per the advice of my CBIOS advisers. I’ve been interested in reading this book (and reading more in general) for a few years now, so I was excited to have this as an “assignment.” Henrietta Lacks was a poor black woman that died from cervical cancer in the 1950’s and is the “donor” of HeLa cells, arguably the most useful, important, and famous cell line in history.
The Immortal Life of Henrietta Lacks tells the story Henrietta’s early life, cancer diagnosis and death, along with the story of her cervical cancer cells, the infamous immortal HeLa cells that continue to live decades after her death in research labs all over the world. Interspersed throughout the book are interviews and the stories of her family members who are still trying to come to terms with Henrietta’s new immortal life and the consequences of being genetically related to one of the most researched cells.
Ethics in the life sciences is a topic I have only recently found interesting. When I was first reading this book, I had a hard time understanding the ethical problems in this case. Was the main issue about the money? Does the Lacks family only feel slighted because they did not receive any payment for their mother’s contribution to science? Didn’t Henrietta know her cells became property of Johns Hopkins during a medical procedure?
Consent procedures in the 1950’s were very different from today. Back then, doctors did not have Henrietta sign consent forms to take her cells, and didn’t explain to her that her tissue would possibly be used in research. Later, scientists also lied to her living family members in order to obtain their cells and DNA for testing. This is in stark contrast to consent procedures in current times. I received my own taste of this when I donated blood for a research project a few days ago and had to sign several forms informing me that my blood and cells may be used for other research and that I was giving my full permission for Penn State to profit from my tissues. Although ThMa doesn’t roll off the tongue very well …
Another huge issue regarding the HeLa controversy was the lack of anonymity of the cells and the DNA they contain. The first few years after the “birth” of HeLa cells, it was unknown who they belonged to; many people referred to the woman behind the cells as “Helen Lane.” Several years later, however, the true identity of the HeLa donor was revealed, which had terrible consequences for her children and remaining family members. One of the biggest ethical issues in genomics is retaining anonymity of DNA samples and it’s the reason why most human samples in research are identified by only a number. The problem with HeLa was that anyone who had the cells could sequence their DNA and, in essence, know almost the exact genome sequence of her relatives, a complete invasion of privacy.
Aside from HeLa, there are countless other ethical issues in the life sciences and too many to talk about in one blog post. I came across this article on facebook today. Long story short, doctors have developed a method (using pigs) to suspend a critically wounded (massive blood loss from a gunshot or stab wound) individual by replacing their blood with a cold saline solution. This lowers their body temperature to about 10°C and gives doctors an extra two hours to repair their injuries without depriving the brain and other critical tissues of much needed oxygen. The pigs, the article states, had no loss in cognitive activity after blood was slowly reintroduced and their bodies warmed. A hospital in Pittsburgh intends to test this on 10 patients in the near future and compare this to 10 similarly injured patients that don’t get this suspended animation treatment. The kicker? Most people (rightfully so) wouldn’t volunteer to sustain a life-threatening gunshot wound in the name of science so the doctors will do this procedure on incoming patients – without getting their official consent. They say this is allowed because the patient will likely die without this treatment so consent is not needed.
As amazing as this procedure is, and, if it works, will save countless lives, it brings the ethical question of consent up again. Is it right for doctors to perform ANY procedure on a patient without their consent? Even if “they’re going to die anyway?” What if the person lives but suffers a devastating brain injury and needs constant care 24/7. Do the doctors pay for this? Are the families of these people responsible, even though this was done without any consent? Will we ever have the answers to these questions?