Henrietta Lacks

This weekend, I finally finished reading science journalist Rebecca Skloot's The Immortal Life of Henrietta Lacks. The only reason that it took me so long to read it - over the course of two months - is that I taught three courses during the semester, have two kids (ages 3 and 6), and a spouse away at a three-week-long seminar.

It is rather serious a subject, but the narrative has such a pull, that you might need to take the book to the beach. It deservedly has received a number of excellent reviews, which can be read at Skloot's own Web site.

Henrietta Lacks is about a woman whose cancerous cells, removed from her body during a biopsy, became the basis of tissue culture research in the late 20th century. "HeLa" cells, as researchers refer to them, revolutionized medical research, contributing to scientific understanding of the basic biology of cancer and the development of chemotherapies. The story is about how and why the cells could be taken from Lacks - a poor black woman seeking care in the charity hospital at Johns Hopkins during the 1950s - and used for research with her consent or knowledge, or that of her husband or children.

Along the way, the book is also about medical research ethics and their development during the last 50 years, following the Nuremberg trials and the uncovering of the Tuskegee syphilis experiment, two grim "milestones" in science. As Skloot writes in her Afterword, the issue is less about compensation - and concerns about the commercialization of tissue culture research are discussed throughout the book - and more about consent. Henrietta Lacks reads as an argument for why individuals ought to be informed at least of the possibility that their tissues might be used for research, even have a say about what kind of research. This book describes the damage that can be done when there is no information and no consent.

As important, the book is also about what happened to Henrietta's family after her death at age 31. While the cells became celebrated as a miracle of science, her children became abandoned, essentially, by their father. When they finally learn about their mother's "contribution" to science, they are ill prepared, emotionally and otherwise, to understand what this means, let alone "appreciate" the good for science and society. For example, one of Deborah's brothers refers to the "rape" of their mother's cells, which they learn - after a lifetime of their own neglect and abuse - have been exposed to nuclear radiation and fallout, HIV, scores of toxins, and other extremes in conditions to "test" their effects on humans.

Knowledge of the HeLa cells esp. devastates Deborah, the fourth of her five children and the only surviving daughter. Deborah becomes the central figure in Henrietta Lacks as she struggles to understand how her mother's cells could have done so much "good," when she herself has suffered so much from her mother's absence. Over and over again, Deborah decries the fact that no one ever bothers really to explain to her what is happening to her mother's cells. Although Skloot admits her occasional impatience with Deborah, she also never condescends to her: Is it any wonder that Deborah is under the impression that clones of her mother are walking around London, given the sensationalism of headlines in the media?

I found gripping, poignant, and difficult to read the chapters that detail the journey of discovery that Skloot and Deborah undertake. They visit a laboratory, at the invitation of the researcher, where Deborah and one of her brothers see their mother's cells under the microscopes and hear from a scientist who has dedicated his entire career to working with "HeLa" cells what they mean to him.

Then Skloot and Deborah look into whatever happened to Deborah's older sister, Elsie, who had been institutionalized as a young child, then forgotten by the family after their mother's death. I found Elsie's story even more disturbing than Lacks' own story. Deborah herself had come to be convinced that Elsie might have been deaf, as she and her brothers also had degrees of congenital deafness, which might have accounted for her apparent "slowness" (not responding to speech) that led to her being certified as an "idiot." Most of the medical records at the institution where Elsie lived and died had been destroyed, but Skloot and Deborah uncover her death certificate, with a rather gruesome photograph attached. Skloot pieces together a story in which it is likely that Elsie, who never reached her teens, had been a subject of medical experiments that might have included surgeries. The news, of course, is almost too much for Deborah to bear.

I can imagine that writing about the breakdown and the ritual of "soul cleansing" that follows were a challenge for Skloot, who rises beautifully to the occasion - I think because she so clearly feels compassion and affection for Deborah and for the other members of Henrietta's family. Indeed, as a cultural anthropologist and a former journalist, I so admired that throughout the almost 10 years that this project took to complete, Skloot respected the fact that this is not her story and that she does not control it. This is critical to how and why she, a young white journalist, gains Deborah's trust.

Initially, I had been thinking I might assign this book in Medical Anthropology or the Anthropology of the United States, but now I am thinking that it just need to be read and discussed widely. Period. It might be ideal for a "Big Read" on a college campus because it addresses important and meaningful concerns about research ethics and science as well as about race and poverty, all of which are not just coincidentally interconnected.

I want to compare this book with Anne Fadiman's The Spirit Catches You and You Fall Down in that it boasts careful reporting, clear and compassionate writing, and a story that catches you and knocks you down. I know any number of anthropologists who teach Fadiman's book in their classes. It also is read in book clubs, in community "Big Read" programs, and in classes on "cultural competency" in nursing and medical schools. Henrietta Lacks ought to become required reading in the life sciences.

What is she?

Just a quick follow-up to my post about the RAP apps now available at the iTunes store. This is a photograph taken of Beanie two years ago: What is she? StraightMan and I used to call her "baby of the world." Which she seems to be. We took a trip to Puerto Rico when Beanie was about a year old, where everybody claimed that she looked Puerto Rican. At other times, people who see her have remarked that she looks "Mediterranean" or "Middle Eastern" or Persian or Indian. StraightMan found a picture of a Sudanese Muslim girl who strongly resembled Beanie (which speaks also to the history and diversity of what "African" is and looks like). We sometimes describe her as our "silk road" child, or someone who looks like she comes from one of the stan's (Uzbekistan or Tajikistan). Which is an apt metaphor for her lineage. Our friends all claim that she looks exactly like StraightMan. I think she looks like StraightMan as a little Asian girl.

So, talking to Beanie about race is something I consider rather important because when people know that StraightMan and I are her parents, that seems to answer the question of "what is she." I want, of course, for Beanie to question whether or not "what is she" matters at all, but I want her also to be able to say more than "I am a person / a girl / a human Bean / etc." Because if we are serious about wanting race really not to matter - that is, to influence our expectations and experiences of ourselves and each other - then we need to start with a real education about race.

Teaching (and learning) about race is a lot harder than just telling children that race "does not" matter. Which, by the way, even children can observe does not reflect their reality. I still remember, during the 2008 presidential campaign, Beanie coming home from preschool and asking me, "Why is it so important about Barack Obama?" Meaning not that he was running for president, but that he was running for president. "He is the first African-American (or black) president" is an answer, but it is not an explanation. Which is what she persisted in asking.

I am finding that talking about race with my kids means talking about history. Not as the story of how things keep getting better and better (and they lived happily ever after in the New World or industrialization or free-market capitalism or so on), but as the choices that people make without always understanding or being able to know their effects or sometimes even thinking or caring about what happens next. So, we learn more from history than just "history." We learn about the complexity of human thought and action: We can talk about kindness and courage and meanness.

Which has the added virtue of making for a better story.

RAP app

So, an anthropologist whom StraightMan and I know and call friend has been developing new ways of communicating with people about race - apps for the iPhone and iPod touch. One is a kind of quiz for teens and adults, the other is a game for kids ages 3 and up to play with their grown-ups. The apps are part of The Race Awareness Project (RAP).

I esp. think the game is a terrific concept. Teaching kids about race - and in particular, modeling for kids how to talk (and listen) about race - is an important and meaningful responsibility. It seems to me, however, that Americans are much more open talking about sex with their kids than about race - or class, for that matter.

Reading about the apps makes me wish I had an iPhone or iPod touch.

Notably quotable

I am breaking my post-break silence with this observation from The Economist (March 20):

The doubters tend to focus on specific bits of empirical evidence, not on the whole picture. This is worthwhile - facts do need to be well grounded - but it can make the doubts seem more fundamental than they are. People often assume that data are simple, graspable and trustworthy, whereas theory is complex, recondite and slippery, and so give the former priority. In the case of climate change, as in much of science, the reverse is as at least fair a picture. Data are vexatious; theory is quite straightforward.

Although this comment describes the controversy surrounding climate change today, I think it applies to so much more - including human biological evolution and "intelligent design," not to mention the persistence of the fallacy of biological "race." The theory of evolution is elegant and the data tedious. Why is there an assumption that it should be otherwise?