The Immortal Life of Henrietta Lacks

The summer read for this year's freshman class at UNCG is The Immortal Life of Henrietta Lacks, by Rebecca Skloot. Incidentally, we as an anthropology faculty also chose this book to represent the theme (ethics) in our department's senior capstone course for the fall. I had not read the book before (my wife had read it and recommended it highly) so I quickly finished it in order to prepare for a discussion hosted by UNCG's Office of Multicultural Affairs last Wednesday (9/4). A synopsis of the incredible story (from Amazon.com):

Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells−taken without her knowledge−became one of the most important tools in medicine. The first "immortal" human cells grown in culture, they are still alive today, though she has been dead for more than sixty years. If you could pile all HeLa cells ever grown onto a scale, they'd weigh more than 50 million metric tons-as much as a hundred Empire State Buildings. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb's effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions.

Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave.

Now Rebecca Skloot takes us on an extraordinary journey, from the "colored" ward of Johns Hopkins Hospital in the 1950s to stark white laboratories with freezers full of HeLa cells; from Henrietta's small, dying hometown of Clover, Virginia−a land of wooden slave quarters, faith healings, and voodoo−to East Baltimore today, where her children and grandchildren live and struggle with the legacy of her cells.

Henrietta's family did not learn of her "immortality" until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family−past and present−is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of.

Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family−especially Henrietta's daughter Deborah, who was devastated to learn about her mother's cells. She was consumed with questions: Had scientists cloned her mother? Did it hurt her when researchers infected her cells with viruses and shot them into space? What happened to her sister, Elsie, who died in a mental institution at the age of fifteen? And if her mother was so important to medicine, why couldn't her children afford health insurance? 

Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.

It is an excellent book, and raises many complicated issues. The book discussion was facilitated by Dr. Frank Woods and Michael Cauthen, both a part of the faculty of UNCG's African American Studies program. (Mr. Cauthen received a Master's degree in Anthropology from Purdue.) Dr. Woods wrote a wonderful Op-ed piece on the book in the Greensboro News and Record some time ago, and he read it to start the off discussion. Mr. Cauthen then told the audience what made Henrietta's cells so unique. Most cells are programmed to die (in fact, it's called "programmed cell death," or apoptosis) after about 50 divisions, the so-called Hayflick Limit. What seems to be going on is that our chromosomes' telomeres, which function sort of like an aglet on a shoelace, get shorter and shorter each time our cells divide. We do have an enzyme, telomerase, that does its best to repair our telomeres, but eventually it gets tired out and the telomeres become too short to allow a successful cell division−hence, cell death. This made it very difficult, impossible in fact, to culture, or keep alive indefinitely, human cells for experimentation. Cancer cells, on the other hand, behave much differently: they continue to grow, and grow, and grow, until they coalesce into (sometimes malignant) tumors. At the time her cells were taken in 1951, Henrietta suffered from Type 18 of the Human Papillomavirus (HPV-18), likely acquired from her unfaithful husband. HPV-18 modified Henrietta's telomerase enzyme in such a way that it could repair her cells essentially forever (as far as we know).

After our biology lesson, Dr. Woods posed a couple of questions to the audience:

• Should the Lacks family be financially compensated in some way for the use of their mother's cells?
• Was Henrietta taken advantage of because she was black?
• Do we, or should we, own our tissues once they leave our bodies?
• In the end, did the ends justify the means?

There were opinions on all of these questions, with one audience member suggesting that Henrietta's family should receive free health care for the rest of their lives. I wonder where, or if, one would draw the line on "family": second generation, third, fourth? Some people wondered if George Gey, the scientist who first propagated the HeLa cell line, should have ensured that the Lacks family received money for the cells. However, Gey himself made no money from his work; in fact, once he had cultured the cells, he gave them away for free to any researcher that could use them. Fortunately, Henrietta is gaining some of the thanks today that she so richly deserved while alive. In reponse to the publication of the complete HeLa genome, for example, NIH will now include Lacks family members on the committees that review grants for research on the sequence. At least the family will have some say in how their relative's genome is used. Johns Hopkins, the institute that originally acquired HeLa, now sponsors a yearly Henrietta Lacks Lecture Series, the ultimate goal of which is to "honor Henrietta Lacks and the positive global impact of HeLa cells."

Dr. Woods presented the second questions in another, very interesting, way: would the same thing have happened if Henrietta had been a white woman? After all, the treatment of Henrietta's cancer and the removal of tissue without permission were standard practice at the time. Our department head, Bob Anemone, argued (correctly, I think) that one needs to avoid judging practicioners of the 1950s by today's values and standards. Another audience member made an equally valid point when she responded by asking (I'm paraphrasing), "Ok, but when do you stop using 'but it was way back when' as an excuse to wash our hands of the past?" My thought is that yes, if Henrietta had been a white woman, or any color for that matter, her cancer would have been treated in the same manner and her cells would have been taken without permission. (However, the side effects of her radiation, like vomiting, abdominal pain, and severe headaches, were probably NOT treated the same, as it was "common knowledge" that blacks as a race had a greater tolerance for pain, a misconception that had, and still has, upsetting repercussions.) What would have differed, I suspect, is how a white woman's concerns would have been treated had she, or her family, raised a legal complaint with the hospital (neither Henrietta or her family could afford a lawyer, and it probably wouldn't have mattered if they could).

What about the issue of ownership? As Skloot points out in the book, there is still no law in place that gives individuals legal ownership of their tissue once they have been removed from their bodies. Most courts, in fact, have ruled against the donor (voluntary or otherwise), the most common argument being that granting ownership of tissues to the individuals from whom they were taken creates too many poential barriers to legitimate research. I don't have a good answer for this one, although I was happy to learn that the Supreme Court has ruled that naturally occurring human genes cannot be patented. One audience member thought that the rate of research in the realm is vastly outstripping our ability to create reasonable regulatory policy.

Regarding the last question, I'll let you read the book and answer it on your own...

References:

Skloot, R (2010). The immortal life of Henrietta Lacks. Random House, New York.