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.

In the Garden of Beasts

The other night my wife, Noell, and I attended a book discussion hosted by the UNCG libraries of Erik Larsen's In the Garden of Beasts: Love, Terror, and an American Family in Hitler's Berlin. The book was an excellent read, and follows the exploits of William E. Dodd, the first American ambassador to a Germany ruled by Adolf Hitler, and his family. From Amazon.com:

The time is 1933, the place, Berlin, when William E. Dodd becomes America's first ambassador to Hitler's Germany in a year that proved to be a turning point in history. A mild-mannered professor from Chicago, Dodd brings along his wife, son, and flamboyant daughter, Martha. At first Martha is entranced by the parties and pomp, and the handsome young men of the Third Reich with their infectious enthusiasm for restoring Germany to a position of world prominence. Enamored of the "New Germany," she has one affair after another, including with the surprisingly honorable chief of the Gestapo, Rudolf Diels. But as evidence of Jewish persecution mounts, confirmed by chilling first-person testimony, her father telegraphs his concerns to a largely indifferent State Department back home. Dodd watches with alarm as Jews are attacked, the press is censored, and drafts of frightening new laws begin to circulate. As that first year unfolds and the shadows deepen, the Dodds experience days full of excitement, intrigue, romance-and ultimately, horror when a climatic spasm of violence and murder reveals Hitler's true character and ruthless ambition

We were lucky enough to have Dr. Karl Schleunes, a professor emeritus of history at UNCG and an expert on early 20th century Germany, lead the discussion. As Dr. Schleunes summarized it, Dodd (who was FDR's third or fourth choice) was sent to do two things: (1) to negotiate the payment of U.S. loans to Germany (American banks had made huge loans to help bail out the German economy in the aftermath of World War I), and (2) to steer Hitler along a more moderate path. He then summarized the historical context that preceded Dodd's appointment.

Perhaps the two most important events were the German experience in World War I and the onset of depression in 1929. Germany ended the war having defeated one enemy in the East (Tsarist Russia) and, in the west, with her armies situated on foreign soil. The German people had to reconcile this with the fact that their government signed an armistice and then negotiated a treaty in 1919 that laid much of the blame for the war on Germany (a not unrealistic interpretation of events) and forced it to concede complete defeat. Germany was thus on the lookout for scapegoats. Dr. Schleunes also pointed out that in 1928, when the German economy was relatively strong, the Nazi party received a paltry 2.7% of the vote. However, in the years after 1929 (the onset of the depression in the U.S. and elsewhere), the Nazis secured ever larger percentages, eventually capturing 40% by the 1930s. Germans appeared, in other words, to be looking for a political party that could restore Germany to her rightful (as many saw it) place among the world powers while, at the same time, providing an explanation for the humiliating defeat in World War I.

This is the situation that Dodd, a professor of history at the University of Chicago, stepped into when he arrived as ambassador in 1933. The consensus among the discussion group was that, despite his best intentions and efforts, Dodd was mostly a failure as ambassador. Hitler obviously did not steer a moderate course, and Dodd resigned his post in 1934. There was quite a bit of discussion on why exactly he was unsuccessful. I think Noell has it mostly right when she argued that Dodd simply was not interested playing political games: in order for an ambassador to succeed, they need people to like them, they need to compromise, and they need to tell people what they want to hear. Dodd really didn't have any of these qualities (depending on how you feel, this could be to his credit or discredit). During his BookTV talk, Larsen was asked his thoughts on Dodd's performance. He gave Dodd a B+ grade, stating further that no one was likely to have succeeded in such a position (a point that the discussion group touched on as well).

One of the more eye-opening things about the book (at least for me) was the level of anti-Semitism within the U.S. State Department. Everyone talked about the so-called "Jewish Problem." One of the audience members, when referring to a particular individual in the book that committed suicide because of her Jewish ancestry, asked how one could tell whether or not someone was actually Jewish. This question became particularly important after the Nazis passed the Nuremberg Laws of 1935, which encroached on, or even eliminated in many cases, the rights of Jews in Germany. Apparently, one had to track down, and keep, the baptismal certificates of your grandparents (there is no equivalent in Judaism) to demonstrate that they were not Jewish. If one had two, three, or four Jewish grandparents, was part of a religious community (i.e., they went to Synagogue), or married to someone of Jewish ancestry, then they were considered Jewish. If one only had a single Jewish grandparent (and in possession of baptismal certificates for the other three), then they were not considered Jewish. (All of this, of course, rested on false assumption that there was some fixed, identifiable thing called the "Jewish race.") 

A couple of interesting tidbits that I learned during the discussion, thanks largely to Dr. Schleunes :

• Hitler did not actually become a German citizen until 1932, the year before he was named chancellor (he was Austrian)
• The Nazi government defended laws that outlawed marriage between Jews and non-Jewish Germans by citing American miscegenation legislation, which prohibited breeding between whites and blacks

Anyway, I highly recommend the book...

Social darwinism in the gilded and progressive ages

I just finished reading (or, more correctly, listening to, as my commute provides ample time for audio books) an interesting book by Evan Thomas, "The War Lovers: Roosevelt, Lodge, Hearst, and the Rush to Empire, 1898". There is a lot of intriguing stuff in here, and the gilded and progressive ages in America were fascinating times for a number of reasons, but what struck me, as an anthropologist, was the  pervasive role that social Darwinism played in American foreign and domestic policy (as exemplified by Theodore Roosevelt, senator Henry Cabot Lodge, and newspaper mogul William Randolph Hearst). The idea that superior groups (however that is defined) were meant to out-compete inferior groups in the "struggle for existence" served to justify much of America's expansionist and imperialist policies towards Spain and the populations then under their rule (Black Cubans and Filipinos).

CNN has a wonderful service called BookTV, where you can watch authors give talks on their books. I haven't seen Thomas's clip yet, but you can find his talk here, a book discussion here, and a nice review of the book here.

UPDATE 3.23.13

I just watched Thomas's BookTV segment. He summed up the book (as they always do...this is actually a good way to figure out if the book will interest you), and then took some questions from the audience. The most interesting question probably dealt with parallels between the war fever of 1898 and that of 2003 just before the invasion of Iraq. Thomas himself was a Hawk in 2003, and he discussed how attitudes have changed, just as they have for the 1898 conflicts.