The Immortal Life of Henrietta Lacks

The Immorta Life of Henrietta LacksThe Immortal Life of Henrietta Lacks, Rebecca Skloot

The most affecting part of The Immortal Life of Henrietta Lacks is towards the end of the book, from chapter 32.  Throughout the book we are shown the emotional effect of Lacks’ death, and the fame of her cells, on her family.  After Lacks’ death her husband remarried to a woman who abused the children, and in particular the youngest son, Zakariyya (pronounced Zuh-CAR-ee-ah) is portrayed as full of anger towards the world, and in particular white people, Johns Hopkins, scientists, and everyone who he sees as having stolen his mother’s cells.

The author, Rebecca Skloot, takes Zakariyaa and Lacks’ daughter, Deborah, to the Johns Hopkins medical center to meet with a research, Christoph Lengauer, who has offered to show them their mother’s cells and some of the research that’s been done.  Throughout the chapter they see all the parts of the research lab, watch the cells divide through a microscope, and ask questions.  Most importantly, though, for the first time they are able to talk with a researcher about what’s been done with their mother’s cells, and have their anger and conflicted feelings be validated by someone from the scientific and research community.  At the end of the chapter, Lengauer gives them both his cell phone number and tells them to call any time with questions about their mother’s cells.

As we walked towards the elevator, Zakariyya reached up and touched Christoph on the back and said thank you.  Outside, he did the same to me, then turned to catch the bus home.

Deborah and I stood in silence, watching him walk away.  Then she put her arm around me and said, ”Girl, you just witnessed a miracle.

I think most people at this point know the basic outline of The Immortal Life of Henrietta Lacks.  It received an amazingly positive critical reception, was covered numerous times in the media, and stayed on the New York Times bestseller list for about a year and a half.  Henrietta Lacks, an African American woman, died of cervical cancer in 1951.  She was treated at Johns Hopkins medical center, and some of her cancer cells were collected while she was there, and without her and her family’s informed consent.  These cells, called HeLa as they were identified by her first and last name, became the first, and still the most productive, immortal cell line.  Because they are cloning themselves and identical, they have been used in what seems like almost all medical research over the last fifty years.  Despite this, her family hadn’t ever been told, had no say over what would be done with the cells, and received no monetary compensation.

On the surface, this is what Henrietta Lacks is about.  The complicated, muddy world of medical ethics, or what “informed consent” actually does, the history of medical advancements being made based on biological donations or participation in trials by poor, primarily black, individuals, throughout our nation’s history.  The story of Henrietta Lacks is a wonderful lens through which to examine these questions.  This is because, unlike, say, the Tuskegee Syphilis experiments the taking of and experimenting on Lacks’ cells didn’t involve any blatant wrong doing or clearly unethical action.  A few conspiracy theories to the contrary, it becomes fairly clear through Skloot’s research and reporting that no one actually did anything “wrong”, per se, in the Lacks’ case, and she wasn’t harmed by the experiments on her cell line after she passed.  It’s even more clear that there’s nothing being done wrong by the scientists currently performing research, although several of us might take pause at the thought that we can buy a person’s cells online, or that a cell line can be patented.  And it’s this murky world of ethics that the end of the book focuses on as well, looking at what “informed consent” actually means, and looking briefly at a man who sued after finding out his doctor was profiting off of his own cells.  The court ruled that was fine since the man who produced the cells had agreed to get rid of them as so much medical waste, and it was the doctor that had patented and started selling them.

This is a valuable conversation, and one that we’re still not really having, despite the popularity of this book.  Count me as one of the people who is extremely troubled by the idea of patenting life of any sort.  It makes me squirm.  Even if there is some sort of equity between the person who donated the cells and the doctors and researchers who profit, I still find the whole thing rather sordid.  However, I think this book goes beyond just the thought of medical ethics, and focuses on the real issue: making sure that we see each other as human, that we recognize what comes from other humans, that we are all treated as whole people.

It’s evident in the book, and from the scene I quoted at the beginning, that what’s most important to the Lackses isn’t just the money—although almost all of them are living in poverty and would certainly appreciate it—it’s the lack of recognition they feel for their mother, the lack of respect they’ve had from the scientific community, the lack of consulting with the family about anything that happens with their mother’s cells.  They are pained that scientists celebrate the HeLa cell line, but forget that it’s so named for a real, flesh-and-blood person, Henrietta Lacks.  One gets the sense that they would have been just as hurt to have some money thrown at them grudgingly with an expectation that then they would disappear as they are now.  What was far more valuable was having someone from Johns Hopkins talk to them and recognize them.

This speaks to a larger issue throughout our society, our forgetting that images, names, stories, research cells, memes, political footballs, etc. are attached to real people and the effect that making them famous in any way could have on them.  We often forget to recognize the humanity in others, those we interact with every day, those who have changed lives, even those who just turn into an internet meme, or, even worse, find themselves at the center of an internet firestorm over nothing.  We ignore the humans and families behind political stories and grieving parents find themselves or their deceased children the targets of social media attacks if they have dared to speak up, or just end up in the news.

Recently, there have been rules passed around medical research requiring informed consent, and also that any identifying information be stripped from cells or other medical “waste” that is used for research to preserve confidentiality and avoid future books like this one.  And to avoid lawsuits from people who want to be compensated for their cells.  Informed consent and confidentiality are good, and I’m glad that this book has brought many issues of medical research to people’s attention.  But even more than that I hope this book teaches us to recognize every person we interact with as a human, with a family deserving of respect.  That there is nothing more important than recognizing and preserving the dignity of every human being.