Saturday, December 10, 2011

Rebecca Skloot, The Immortal Life of Henrietta Lacks (2010)

The Immortal Life of Henrietta Lacks reports about a significant development in medical research that occurred during the 1950s and continues to provide benefits for both research and therapy for decades thereafter. If that was the tag line about this book, it might never had ended up on the best-seller lists. Add to that tag line that the book confronts a thorny question of medical ethics --- what sorts of disclosures must be made by medical researchers who take body tissue (in this case, cancer cells from a dying patient), and the fact that those in the medical research supply chain subsequently earn millions of dollars from that body tissue, and perhaps some in the public begin to pay attention. And add to that stew the fact that the donor was a poor African-American woman whose heirs never benefited from her donation; whose descendants suffered anxiety and some level of anger because of misinformation and ignorance when their mother's name and contribution to medical science became public knowledge two decades after she died; whose descendants never sought financial compensation or benefits, only recognition for their mother's contribution to medical science, and you have a best-selling page-turner. While there are several protagonists in this story --- including the author --- the primary protagonist are the so-called "HeLa" cells taken from the cervix of Henrietta Lacks by a doctor at Johns Hopkins University. The HeLa cells were the first "immortal" human cells ever grown in culture --- cells that reproduced themselves prolifically. They were essential to developing the polio vaccine, as well as other scientific landmarks since then have used her cells, including cloning, gene mapping and in vitro fertilization. The significance of these cells is that because they created a virtual pipeline of human cells that could be replicated in the billions, they enabled medical research to be undertaken on actual human cells, rather than on humans themselves or some other animal.

So that is the story. But there is a subliminal story that leads me back to the subject of the previous post --- the subject of identity, specifically group identity. Rebecca Skloot, the author of The Immortal Life of Henrietta Lacks, does not explore the subject of cultural identity or racial identity, but she does explore, at least superficially through her narrative, group identity in the context of a family and the family members' genetic links to their past. Genetic identity is linked to various other forms of group or social identity: political identity (the heritability of power), ethnic identity, religious identity, family identity, racial identity, and caste. But as an article in the British Medical Journal notes, "These identities overlap in various ways, and genetic evidence will not affect them all equally . . . confusion looms when genetic markers conflict with other kinds of markers of group membership such as shared culture or historical narrative." This was a point I was making in the previous post, when I pointed out that Jews do not appear to define Jewish identity strictly in terms of a genetic link to the past. It may be, as genetic research on some Jewish communities suggests, that within some ethnic/religious groups genetic identity is stronger than other groups, but is this an attribute that anyone, Jewish or not, seriously wants to promote about what it really means to be part of a human subgroup? It smacks of Nazism.

As I read Skloot's story of Henrietta Lacks and her family and thought further about The Finkler Question, I was reminded of a Hebrew word, mizpah, which means an emotional bond between people who are separated (either physically or by death). The word might have application, for example, to Jews physically separated from one another by virtue of the diaspora and their mutual recognition of a shared Jewish identity. But it would also have application to Henrietta Lacks and her children and even the grandchildren that she never knew. This bond is a type of identity, and at its core is human emotion. Several books that have been discussed in this blog have highlighted the importance of emotion in building social relations. (See April 11, 2011 post, discussing David Hume and Antonio Damasio) As Dacher Keltner writes, "Emotions are involuntary commitment devices that bind us to one another in long-term, mutually beneficial relationships." (See July 16, 2010 post). In the human context, certainly emotional bonding among the persons is an attribute of group identity, although the strength of this attribute may vary among the persons. As Frans DeWaal observes, however, this same emotional bonding may exist in some other species as well (see November 9, 2010 post).

Genetic identity is, of course, nearly definitive in the discussion of group identity at the species level, but within a species, different groups become influenced by nurture and culture and social constructs are developed. And while genes may be at the foundation of our physical design that triggers various emotions and behaviors that make us more or less social, nurture and culture are at the foundation of reinforcing and making some emotional social bonds stronger than others leading to the formation of social groups and their identity.

The tug of genetic identity is felt by Henrietta Lacks' daughter, Deborah, whose anxiety grows after she learns that her mother's cells have become famous. One of her fears is that the cancer that killed her mother might take her life as well, a fear which is quelled only when she learns that her mother's cervical cancer was caused not by a genetic disease or predisposition, but the human papillomavirus. Research indicates that individuals struggle with their genetic identity, but for reasons that appear to be related to the difficulty of many in understanding just what it is about genes that is important enough to focus upon in terms of identity. More significantly, it is an emotional bond that establishes this family identity, a bond developed during the early years' of nurturing Henrietta's children, and a shared historical narrative that ties mother and children together --- a narrative that Rebecca Skloot has told well.

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