A Book Review
Skloot, Rebecca. (2010) The Immortal Life of Henrietta Lacks. Crown Publishers, Random House, Inc., New York, NY. 358 pp. ISBN 978-4000-5217-2. $26.00.
Rebecca Skloot writes a summary account of the early history of tissue culturing in modern biomedical research and the story is centered around Henrietta Lacks, the donor from whom the HeLa cell line are derived. She recounts Henrietta’s life and experience with cervical cancer and treatment at Johns Hopkins during segregation-era 1940’s, and then follows the psychological impact of the development, dissemination, and widespread use of the HeLa cells on Henrietta’s family over several decades. She asks important questions on ethics of human research protections and use of patient-specimens for research and commercialization. Unfortunately, her strong account of Henrietta’s experience is bookended by tones of fear-mongering.
HeLa cells are used mostly in basic research on cell biology but also in biomedical research; in experiments whose goals are to understand how proteins, genes, drugs, metabolites function. Compared to other cells, these are very large, and therefore quite amenable to microscopy. One can easily visualize and distinguish the various cellular compartments and organelles and have been vital to our understanding of the basic principles of cell
biology and cell physiology. They are adherent, meaning they use proteins on the outer part of their cell membrane to stick to plastic and are, practically speaking, easy to use in the lab. They produce a lot of biological material like proteins and RNA, and so are quick sources of total protein or total RNA after having done some gene or drug manipulation to understand how a gene or drug functions at the cellular level. They easily take up nucleic acids and produce the proteins coded in the new DNA, and so can be sources of purified recombinant proteins that can be used for research on protein chemistry, immunology, vaccine development, or therapeutics. A search in Gene Expression Omnibus shows 1,686 datasets submitted that used HeLa cells in large-scale gene expression studies. In PubMed, a simple search for HeLa results in 73,847 articles. This is a vast amount of knowledge. It represents countless grad-student hours in tissue culture maintenance, experiments, data acquisition, interpretation, and write-up. All this is to demonstrate the importance and ubiquity of these cells in modern biomedical or biological research and also to note that the origin-story of this cell line would be of interest to many researchers.
Rebecca Skloot earned a BS in biological sciences from Colorado State University and MFA in creative non-fiction from University of Pittsburgh. You wouldn’t learn this from her biography on her own website or the side-sleeves of the book, I had to find the information from wikipedia (which sourced it from Bookmarks magazine). She says in her bio on her webpage that she taught courses in writing at University of Pittsburgh, not that she earned an MFA there. Pitt’s Department of English published a press release on her as a success-story. I’m only noting this because I am inherently skeptical when people are not up-front about their credentials. She probably worked as a teaching assistant for undergraduate writing workshops as part of her MFA program. The Immortal Life is her first book, the product of 10 years of research, and has won many critical awards, including from the National Academies of Science.
The strength of the book is a retelling of the story of Henrietta’s life, struggle with cervical cancer, experience with doctors at Johns Hopkins and the development of the HeLa cell line. Skloot uses interviews with family and doctors and medical records to reconstruct what happened. The reader strongly empathizes with Henrietta and her family. It is a strong lesson to researchers on the importance of informed consent and protections for human subjects in research. It is poignant because the origin story behind the ubiquitous tool used in research is a tale of poverty, suffering, opportunism, and told against the backdrop of segregation and social injustice for Black Americans in the early and mid-20th Century.
For me, the story of how people lived and what their experiences were like are the strongest. The imagery of Henrietta’s home, her life, her children, and what it would have been like to physically trudge to Johns Hopkins to treat a “blackness spreading inside,” causing great pain to her insides is moving. That this happened to her without education on biology, medicine, or knowledge of cancer is all the more poignant. This is where it becomes uncomfortable to me because it reminds me of the empathy we feel when a child is treated for an injury. In conveying her message, Skloot tends to infantilize her subjects. Nevertheless, it’s a history that biomedical researchers should understand.
Unfortunately, the history lesson is bookended by bits of propaganda. She starts the book off by giving a brief sensationalist account of tissue culture research in the United States. Here, she tells history from the perspective of magazine stories and newspaper headlines. It would be like writing in 2065 about the history of President Obama’s first term from the perspective of Fox News headlines and Drudge Report stories. She even uses Nazi imagery and assigns motives of “creating a master white race,” to original tissue culture experimenters with chicken heart cells. It is an interesting story of scientific misconduct and misrepresentation. The researcher supposedly has heart cells that live for decades, but the cells are long-dead and he’s just repopulating tissue cultures with donor cells from the nutrient sources. But it could be told without the Nazi scare tactics. Instead of sensational newspaper headlines — missing were the letters, lab reports, diaries, notebooks, or even journal articles. Skloot spent over a decade tracking down primary information on Henrietta’s story, but failed to go beyond headlines written to sell newspaper/magazine copies in reporting scientific history.
In the final portion of The Immortal Life, Skloot engages a discussion on research ethics, informed consent, and human research protections. I think these discussions are important, but unfortunately, she sets up a straw man to beat on. She sets up two overarching straw men: 1) financial gain to researchers from patient-derived or donated tissues; and 2) the ethical use of tissue specimens (usually from pathology or autopsy) from uninformed, non-consenting patients.
On the first issue, she implies that researchers are profiting on a large scale by commercializing tissues from specific hapless patients. I wonder where she would draw the line. She offers some specific examples, for example, a patient who sold his antibodies to be used for developing hepatitis vaccines. Here, both the researcher and the donor befitted financially. But what about less clear-cut benefits? The typical situation is a graduate student using donated blood/tissue to study the function of some protein inside cells. She writes a dissertation, publishes a paper, graduates, and gets a job. She directly benefited financially from the donor’s cells. Without them, the research wouldn’t have been done: no paper, no dissertation, no graduation, no job. Does she owe the donor a cut of her salary for life? What if, over the 5-6 years of graduate school, she used samples from dozens or hundreds of donors? Does she owe dozens or hundreds of people a cut of her salary for life? Without them, she’d be nowhere. What of developing a real commercialized product? Say I am a researcher trying to develop a new in vitro diagnostic tool, I would need hundreds and hundreds of patients and controls to accurately test my new tool. Odds are it won’t work. But if it does, it could be commercialized for huge financial gain for myself and the company that I sell the license to. Future patients benefit too, by improved medical care and quality of life. Maybe it reduces health care costs. Do I now owe the several hundred patients a cut the patent license? Does the company owe them all a cut from selling the product? Would the product be more expensive now? At what cost to society? How do we keep track of all these patients / donors? Do we keep an up-to-date database on their names and addresses? This violates the huge ethical principle for human research protections in preserving patients’ privacy. It is overwhelmingly the case that researcher examining the specimens under a microscope or characterizing the gene sequences or protein interactions has never seen the patient, has no identifying information, and would never be in a situation to link the specimen to the human being. This is to protect the privacy of the donor.
On the second point, Skloot seems to insist that the practice of obtaining tissue specimens from patients without their knowledge or consent is widespread, and on a massive scale, but she doesn’t offer much evidence for this. There are many guidelines, issued by the Department of Health and Human Services; and I will link to several resources for your perusal. Skloot repeats several times in the Afterward of The Immortal Life, that while there are plenty of guidelines, there are not “laws.” The fact is that the Secretary of Health of Human Services is mandated, by law, to issue and enforce regulations on human research protections and these regulations do have the force and weight of law. That the power to generate the guidelines is vested in this office allows the regulations to be flexible to changing technology and more enlightened attitudes. By enlightened, I mean that the trajectory is for greater and greater respect for individual autonomy and more transparency in research protocols and results. In every graduate school, students take courses on research ethics, they are to understand history of human research protections, and anyone doing research involving human subjects must take annual recertification courses. Our protocols and informed consent forms are approved by Institutional Review Boards. When we accept grant money, we sign an affidavit declaring under penalty of perjury and felony that we will implement the human research protections specified by the Department of Health and Human Services. The institutions that we work for also declare assurances that they will oversee our activities and implement HHS’s policies under grave financial and institutional penalties. There’s no huge conspiracy to separate people from their cells without their consent and find profit. It’s unfortunate that Skloot ends her book on a paranoid note.
A potent final comment is that the affliction that killed Henrietta Lacks in 1951, cervical cancer, is now preventable in 2013 with the human papilloma virus (HPV) vaccine.
- US HHS Informed Consent
- Office of Human Research Protections Guidance (PDF of Frequently Asked Questions – specifically deals with issues of tissue specimens from patient biopsies)
- University of California San Diego Human Research Protections Program
- Helsinki Declaration
- Smithsonian Archive on HeLa Cells