It’s been a while since I have pre-ordered a book and waited expectantly for its arrival. Ever since reading the first reviews of The Immortal Life of Henrietta Lacks by Rebecca Skloot on several Science Blogs sites, I have been itching to read this book for myself.
So, when I drove home Tuesday night and saw the boot prints in the snow leading to the front porch, I knew the awaited tome had finally arrived. And so, I began my journey, guided by the able pen of Skloot, through the life of Henrietta Lacks and the incredible story of her tumor cells, first introduced to me as HeLa cells when I was a college student. At that time there was virtually no acknowledgment of the fact that these cells, a staple of cell biology research and teaching, originally came from a person, a mother, a wife, a daughter.
These blog entries will not attempt to be a review of Skloot’s book; more experienced book critics have done that and done it well. Instead, here is my reaction to the book “journaled” as I read—my thoughts and questions as a scientist, a writer, a woman, a mother, a daughter, and a member of the human race.
Entry 2 February 8, 2010
First Point Henrietta wasn’t the only person whose tissue was taken without her consent.
Henrietta Lacks was examined and diagnosed by Dr. Howard Jones. He and his boss, Richard Wesley TeLinde, had proposed a controversial theory (at the time) about cervical cancer that suggested that the “dangerous” invasive cancers began as “carcinoma in situ”, cancer cells that lay on the surface of the cervix but had not yet invaded the tissue. TeLinde thought if he could get the carcinoma in situ cells to grow in culture and become invasive, he could prove his point. To work on culturing cervical cancer cells, he enlisted the help of George Gey, head of tissue culture research at Hopkins. All of these physicians were genuinely concerned about saving lives, solving the problem of cancer, but while they worked diligently on the problem of cancer and saving thousand of women’s lives in the abstract, they didn’t “see” the individuals who came to them as patients.
“Like many doctors of his era, TeLinde often used patients from the public wards for research, usually without their knowledge.”
“Gey took any cells he could get his hands on—he called himself ‘the world’s most famous vulture, feeding on human specimens almost constantly’.”
“TeLinde began collecting samples from any woman who happened to walk into Hopkins with cervical cancer.”
All women in public wards, white and black, who were too poor to pay for health care contributed cells. Not because of their skin color, but because of their social and economic class. There are many things that can define a “vulnerable population”: skin color, inability to read and write, inability to speak a particular language, cognitive impairment, physical disability, youth, or advanced age to name a few. Anytime we run roughshod over the rights of an individual because we deem them as less important than the ideal or goal we are trying to reach for society (or science), we are violating that person just as Henrietta Lacks was violated when her cells were taken without her permission.
Second Point Science has a bad habit of only highlighting the positive results.
“…everyone else in his lab saw Henrietta’s sample as something tedious—the latest of what felt like countless samples that scientists and lab technicians had been trying and failing to grow for years.”
So often science neglects the work that yields negative results, yet it is from “getting it wrong” over and over that we are able to make the incremental progress required to “get it right.” Often the work that yields results that don’t support our hypotheses (or, in this case produce cells that did not grow in culture) is overlooked, barely mentioned, much like those countless women who contributed (without their knowledge) the “countless samples” in the quote above. Their families will never know what they contributed or even that they did so.
Entry 1 February 3, 2010
Several things captured my attention this morning as I read the opening pages of this book, but one stood out in particular. Chapter 1 is preceded by words from Henerietta Lacks’ daughter, Deborah, in which she talks about being the daughter of “HeLa”. She acknowledges the good that has come from the research done on HeLa cells, expresses righteous and understandable anger at all of this being done without any knowledge of her mother or the immediate family, anger that money was made on technologies developed from research with HeLa cells, when HeLa’s children couldn’t even afford to go to the doctor, and just plain exhaustion at the fight of it all. Deborah concludes, and you can almost hear her sigh as you read the end of the passage, “I just want to know who my mother was.”
Almost without thinking, I wrote in the margin of the page: “Don’t we all?” I lost my mother a few years ago, and I, along with my siblings, have struggled with much the same question, trying to remember who our mother was, to etch indelibly in our minds the image of her that seems to be fading daily: squinting at out-of-focus 8mm films, searching for any saved letters or messages, coveting every rare photo. I have talked with friends who have also lost their moms, and they say the same thing. One even said that there really wasn’t much physical evidence left of her mother’s life, that the evidence of her mother was really in the memory and habits of the people she interacted with. While Deborah Lacks’ situation is unique: learning that cells from your deceased mother’s body have been propagated over and over until they would weigh nearly 50 million metric tons if collected in one place is unimaginable, her reaction to having lost her mother is universal. She wants to know who her mother was, to know more about her, to know what she would think, to know what her voice would sound like. Even 50 million metric tons of cells can’t answer those questions.
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