Not so with The Immortal Life of Henrietta Lacks, Rebecca Skloot's book of the history of the cell line (known as HeLa) grown from a biopsy of Ms. Lacks cervical cancer tumor. I love good mystery and suspense stories and this book is one of the best I've recently read.
This is not to imply this was a sensationalized story. If anything, Ms. Skloot writes of the experiences of the scientific/medical community and those of the Lacks family in an un-biased, fact-based manner. Skloot's depiction of her experiences with the Lacks family and the history of the cell line is not dissimilar to a fictional detective uncovering the clues to a crime.
Briefly, in the early 1950s Henrietta Lacks was treated in the black ward of Johns Hopkins hospital for cervical cancer. As part of her treatment, a biopsy was taken of the tumor. Some of those cells made their way to a researcher who was attempting to find a way to grow human cells in culture. Cells from Henrietta Lacks's tumor were the first to grow successfully in a culture medium, eventually commercially, and have been used to help test the polio vaccine, study chemotherapy treatments, and evaluate the effect of zero-gravity on human cells. This cell line is still alive today and the weight of all cells grown since Lacks's death weigh more than she did in life many, many times over.
Through grit, determination, and likely a stubborn streak a mile wide, Skloot is eventually able to interview many of the living members of Ms. Lacks's family. Skloot's quest to meet the family and the family's quest to understand the role of Henrietta's cells in modern science frame the narrative. Yet, this is an entirely human story, full of the failings and successes, strengths and weaknesses that fill the book of humanity.
Even the first passage I marked indicated it was the human story that captured my attention.
As one on of Henrietta's relatives said to me, "If you pretty up how people spoke and change the things they said, that's dishonest. It's taking away their lives, their experiences, and their selves."And the lives of Henrietta's offspring are not pretty. One of her sons ends up in prison for murder, one daughter must fight off a cousin-rapist, another dies in an institution. Henrietta's early death leaves her offspring motherless and lost. They face the ravages of life and respond with human fear and anxiety. This book is about the pure humanness of the Lacks family.
Yet, the rest of my markings indicate there was something else that caught my attention. There are myriad ethical dilemmas throughout this text. While Emily's post focuses on the ethical dilemmas of scientific/academic research in a capitalistic, for-profit world, the passages I marked reflected my agitation the state of medical ethics, how the researchers were simply following the status quo.
For better or worse I've taken a lot of philosophy classes and many of them have included the readings of Immanuel Kant who posits that the Categorical Imperative form the ground work of universilizable ethics: In essence only do something if that something won't screw up the world if everyone else does it, too. For example, you shouldn't steal because if everyone stole, the world of commerce and personal property would implode. The second maxim goes like this:
"The rational being, as by its nature an end and thus as an end in itself, must serve in every maxim as the condition restricting all merely relative and arbitrary ends." (Kant, Grounding for the Metaphysics of Morals)Or, each person is an end in and of him/herself, of infinite value, and should not be used as the means to achieve some other purpose.
Or, the exact opposite of what the scientists working with the HeLa cells did. Without any sort of compensation the medical/scientific community used Ms. Lacks's cells, her family's cells, and the bodies of innumerable others as a way to propel their own advancement and to promote their own self worth while simultaneously negating the worth of those they studied.
A report from Science asked Southam (medical researcher) why, if the injections (of HeLa) were as safe as he swore they were, he didn't inject himself.
"Let's face it," Southam responded, "there are relatively few skilled cancer researchers, and it seemed stupid to take even the little risk."However Southam was more than willing to inject others, without their knowledge, with these cancerous cells. When this situation finally came to the attention of the University of the State of New York Board of Regents, the defense boiled down to "If the whole profession is doing it, how can you call it 'unprofessional conduct'?" Over and over Skloot finds evidence where the medical community, following their own norms disregarded the value of their human subjects in pursuit of "the answer."
Granted one can argue, quite extensively I'm sure, about whether or not Henrietta Lacks's cells are human and should therefore not be treated as means to an end. Regardless, one can certainly appreciate that people, even if they volunteer for studies, should be informed of the (potential) content of what goes into their bodies. Researchers should give those they study the same respect and regard they give "the answer" they are searching for.
Skloot has done a wonderful job of showing the individual, the family, the humanity behind HeLa-derived advancements. She provides honor and shares the value of the Lacks family. Honoring the HeLa cells with humanity, humility, and honor.