Carrier: Untangling the Danger in My DNA by Bonnie J. Rough, and The Immortal Life of Henrietta Lacks by Rebecca Skloot
Occasionally I experience an odd convergence while reading, and find myself unexpectedly with titles that have a lot in common. Recently, after Bonnie Rough’s incredibly intense memoir of genetic testing, Carrier, I picked up Rebecca Skloot’s investigation of the HeLa cells, The Immortal Life of Henrietta Lacks. While written in different styles and from different perspectives, both focus on the significance of the smallest part of the human experience: our cellular development. For Rough, it is all about who she is and what that means for the children she hopes to have, while for Skloot it is about shining a light on a woman who changed science history and yet has been lost for decades, even to her own children. Both books have stayed with me long after turning the last pages.
Rough lays bare her family’s complicated medical background as she seeks answers about her own genetic makeup in Carrier. This is a very emotional book, but Rough is careful also to get the science right. She explains in detail the physical ramifications of hypohidrotic ectodermal dysplasia (HED), and how it has affected numerous family members, including her grandfather and brother. In particular, she delves into her grandfather’s life and how the disease led him to a lifetime of risk taking, promise breaking and outright lying. As she writes about his long, slow downfall, Rough can not resist questions about how life might have been if he had not suffered from the infections, breathing disorders and other physical maladies which led to self medication and drug dependency. She makes an interesting choice in these ruminations on the past to write in her grandfather’s voice. I’m not entirely sold on this -- the shift from first person is a bit awkward, and it is also problematic to see a nonfiction title present what is clearly speculation. But to her credit, Rough is trying to humanize her grandfather in these passages. As interesting as all the history is, however, it is not the real point of the story. Rough and her husband would like to have children, and they need to know first if she carries the HED gene. The weight of that choice -- the decision to find out -- is enormous. She will no longer be leaving the matter up to fate as previous generations have done. Now, if she is positive and becomes pregnant, then she will know how the baby will suffer. This raises another choice, of course, about choosing only to have a healthy baby.
Rough doesn’t shy away from just what it means to want a child without HED, an especially hard topic, as her beloved younger brother suffers from the disease and is key to unlocking her own genetic ties. She writes about her mother’s choices, her grandmother’s choices and visits the past as she tries to better understand her grandfather's life. Even those with no experience with a disease like HED will understand the grave decisions Rough and her husband are making and why not knowing seems, in many ways, the easier choice. It gets quite heart-wrenching, but she doesn’t back away or waste time making excuses. Perhaps most perceptively, she also points out that her choice to know changes everything for her family -- no one can deny this decision, not for themselves and not for future generations.
Conversely, Rebecca Skloot’s The Immortal Life of Henrietta Lacks is about not having choice -- in this instance, the complete absence of choice for one woman, and her cells, which later became one of the most significant scientific discoveries in history. Skloot is tangentially attached to Henrietta Lacks; she learned only enough about her in a college class to want to know more. From basic curiosity to writerly obsession, Immortal Life is as much the story of what happened to the Lacks family as it is Skloot’s pursuit of their history. While this unique angle certainly strays far from the standard science text, it brings what has otherwise remained an American history footnote into our cultural conversation. Skloot’s emotional response to Henrietta’s death and the lives of the very young children she left behind draws the reader into a complex story of the first “immortal” human cells. She is both clear and concise while explaining the complexity of what researchers accomplished with the HeLa cells. More importantly however, her deep sympathy for what happened to the people who loved Henrietta Lacks lays bare any notion that research subjects are removed from their humanity, even when those subjects are the smallest pieces of who we are.
Henrietta Lacks was an African American woman who died of cancer in 1951. As Skloot explains, while she was receiving treatment at Johns Hopkins, her cells were removed without her knowledge, common practice at the time. Remarkably, those cells did not die in the lab and instead proved incredibly easy to reproduce. They set off a chain of research that has touched millions of lives. Henrietta Lacks had cells that were no less than the most amazing cells in history and yet no one who worked on them, and bought and sold them, knew about her or her struggling family.
It is within all these hidden histories that Skloot immerses herself; the private anguish and uncertainty that has dogged Henrietta’s children ever since her death. Although they are aware that her cells accomplished something, and indeed have taken part in follow-up research, no one has ever explained to them fully what happened to her or what her cells have meant to modern science. Lost in lives full of half truths and suspected notions and haunted by unspoken fears of what might happen to them, the adult children of Henrietta Lacks are angry, suspicious and deeply saddened. As her life becomes more entwined in theirs, Skloot uncovers a second horrifying family tragedy and finds herself on yet another path into the past and another ugly chapter into America’s social history.
The Immortal Lives of Henrietta Lacks has received many glowing and well-deserved reviews. It is fascinating and informative reading with an inspiring attention to detail. Reading both Skloot’s book and Rough’s Carrier makes for an interesting comparison, as one author is, by definition, so intimately involved in the story she was writing, while another chose to become as much a part of her research as she possibly could. In both books, the reader will find questions and answers, connections and concerns that they did not anticipate. These are incredibly intimate reads, both of them, but you will be much richer for experiencing what Skloot and Rough have to share, and grateful for their dedication and determination in sharing it.
Carrier: Untangling the Danger in My DNA by Bonnie J. Rough
The Immortal Life of Henrietta Lacks by Rebecca Skloot