The Immortal Life of Henrietta Lacks

Almost anyone associated with medicine and medical research has probably heard of, or even worked with HeLa cells. These are cells from a culture created in the 1950's from the cells of a woman with cervical cancer, and the cells are referred to as immortal because of their abnormal ability to multiply and thrive. While cells are generally extremely difficult to keep alive, even with very careful culturing, this cell line exists even today, due to the cells' "atypical pathology". They just keep dividing endlessly, to almost biblical proportions. While we don't have a way of knowing how many of the cells there are today, one scientist estimated that if we laid all the HeLa cells that ever existed end to end, there'd be enough of them to wrap around the earth three times. This cell line has been pivotal in most of the medical discoveries and inventions you can think of from the twentieth century, including the invention of the polio vaccine, in vitro fertilization, cloning, gene mapping, and the invention of the Pap Smear test to detect cervical cancer, to name just a few. They were the first human cells to be taken to space, and were used as a subject to study the effect of atom bombs on cells.

The book, The Immortal Life of Henrietta Lacks by Rebecca Skloot, is about the woman behind these cells- Henrietta Lacks, and her family, who were completely unaware of everything that went on- the cells that were taken from her, that still live today, and the big multi-billion dollar industry it has led to. Since the first cell culture created with her cells at Johns Hopkins, her cells were bought and sold by various organizations throughout the world for conducting medical research, while her family, with five of her children, were left behind in a difficult financial situation, unable to pay their medical bills.

The book talks about Henrietta's life as a colored woman, growing up near Roanoke, Virginia, and later moving to Baltimore. In some ways I could relate to it closely because of the familiarity with the places where the story took place. I have lived in Virginia, very close to Roanoke, as well as in Baltimore. The mention of the Bromoseltzer building, the Baltimore harbor and Johns Hopkins, brought back memories.

It is not an easy or a pleasant book to read. For one, the story is very sad. Henrietta's cells are taken from her tumor without the family's knowledge, as the concept of Informed Consent doesn't exist at the time. Henrietta, in her personal life, is portrayed as an amazing woman, who sadly dies very young. She's barely thirty when she leaves behind 5 children, one of whom is institutionalized at a very young age because of being a special child, and tragically dies in the dingy mental institution for "negros" after being a victim of medical research with pneumoencephalography. The other children are brought up by a relative of the Lackses, who ends up moving in with them, sleeping with their father, and abusing the children to no end. Her husband also sexually abuses Henrietta's elder daughter, Deborah Lacks. All in all, the children end up having an unimaginably hard childhood and miss the warmth of having a mother.

The protagonist in most of the book, and the main Lacks family contact for the author Skloot, who helps with the research and reporting for the book, is Deborah Lacks. She and her family are constantly contacted by doctors and the scientific community, who are only interested in using the information they get from the family to benefit their studies, but provide little information back to them. Since none of them are well educated, they are left to imagine what might be going on, which puts them, and especially Deborah, through an extremely traumatic life. She suffers from stress related diseases like high blood pressure and stroke, and eventually dies of a heart attack.

The book is hard to read also because of the amount of scientific and medical detail that it goes into. Skloot talks about the field of medicine and biological research, conflicts of interest, ethics and racism.

There are some interesting trivia that fall out of the book; for instance, I learned that there exist biological patents, i.e., patenting of living matter, and that, the reason they exist is because of the invention of a man named Chakrabarty who worked for G.E in 1980 or so, who invented a genetically engineered bacterium specifically designed for cleaning  up large scale oil spills. He fought a case in the Supreme Court, which he won, and following that, biological matter could be patented if they had been modified by the use of "human ingenuity". This opened up the possibility of patenting cell lines, since it took human ingenuity to culture them, and modify them if and as necessary.

Skloot also talks about bioethics and the Nuremburg Code, and likens the situation of blacks being used as subjects for medical research to the Jewish clinical trials during the Second World War.

Towards the end of the book, Skloot describes the touching story of Deborah and her brother, Zakkariya, going to Johns Hopkins to see their mother's cells under a microscope, which is all they get to remember of her as they were very young when she passed away. There they get to see one of their mother's cells dividing right in front of their eyes, under the microscope, which they find magical, and almost go into a trance witnessing it.

Deborah feels immense pain every time she hears of research conducted with the cells to bomb them, or inject them with HIV, or cross them with rat cells. She wonders if her mother still lives through them and feels all the pain.

The whole story of the HeLa cells is a complex one, involving a lot of questionable ethics, secrets and scam. For a long time, no one in the scientific community knew or cared who the person behind the cells was. HeLa, at one point, was thought to belong to a woman called Helen Lane. The book vividly portrays how disconnected medical practitioners can be from the human side of things. It reminded me of something I read in Abraham Verghese's Cutting for Stone. In that book, a question comes up, "What emergency treatment is administered by ear?" The answer is "Words of comfort". It is quite sad to see the healthcare field being a mere "business".

Skloot's vision behind writing this book was to make the story of the real woman behind these cells and their invaluable contributions to science known to the whole world, to tell the story like it was, and I certainly hope it reaches a broad spectrum of readers, especially those in the medical field.