Science Asides: Ethics in The Immortal Life of Henrietta Lacks

Recently, I chanced upon an Atlas Obscura article discussing lördagsgodis, the Swedish tradition of indulging in candy on Saturdays. What drew my attention, however, was that title mentioned “human experimentation”. As it happens, lördagsgodis’s roots can be traced to experiments performed on mentally ill patients during the mid- to late 1940s that established sugar’s role in cavity formation. The study, which neither benefited its patients (quite the opposite) nor obtained their consent, was not unique to Sweden.[*] In fact, its ethical issues suggested those raised in The Immortal Life of Henrietta Lacks, the tale of an African-American woman whose cells, collected without her permission in 1951, led to profound scientific discoveries. Given how deeply this nonfictional account delves into medical ethics, politics, racism, and scientific discovery as they intertwine with the lives of Henrietta Lacks and her family, I will focus on the more poignant moments that exemplify these issues.

History, Ethics, and Human Experimentation

As author Rebecca Skloot observes, patients of US public wards often were unaware that they served as research subjects, something some researchers considered to be an acceptable trade for receiving treatment (29–30). Such patients, particularly impoverished, poorly educated African-American patients living in the pre—Civil Rights era in the United States were unlikely to ask questions: the presumption that physicians “knew best” coupled with widespread racism alone prevented such a thing (Skloot 63). And before the advent of Institutional Review Boards in 1966 (Sparks 2017),[†] research involving human participants did not receive much formal oversight (Skloot 131, 136). What happened to Henrietta Lacks, specifically taking her cancer cells without her knowledge or consent, was both the norm however unpalatable we might find it.

For Henrietta, there were more personal consequences related to the treatment that permitted her cells to be collected. Johns Hopkins, the hospital where Henrietta was treated, standardly informed women of childbearing years that hysterectomy led to infertility—one of the rare instances where patients did receive adequate information from physicians in this book. And yet this did not happen in Henrietta’s case. Her records revealed that she would have refused treatment had she known (Skloot 47–8). And although she would not have lived long enough to bear another child (Skloot 86), the choice should have been hers. The tissue sample collected from this hysterectomy, however, continued to grow long past its expected life: the discovery of an immortal line of human cells had been found (Skloot 40–1).

slacks ethics microscope.jpg

Amazing Discoveries and Uncomfortable Juxtapositions

The importance of Henrietta’s cells (called HeLa) to scientific research is vast. For example, HeLa played a large role in proving that Salk’s polio vaccine worked—and it was African-American scientists and technicians who produced the massive quantities of HeLa cells needed to do so (Skloot 93–7). Yet this achievement also represents one of the most painful juxtapositions in The Immortal Life: the HeLa factory was located at The Tuskegee Institute, a place better known for its infamous syphilis study involving African-American men.[‡] The terrible disparity between HeLa’s role in saving the lives of so many people—regardless of their racial background—and the unnecessary deaths of African-American people is more shocking when you consider that twelve of the Tuskegee study participant’s children still receive benefits (CDC 2017).

Disclosure and Family Distress

Not long after Henrietta was identified as the HeLa “donor” in the early 1970s, the Lacks family discovered that her cells were still alive, a revelation they did not understand and found alarming (Skloot 173, 175–81). Further interactions with researchers did little to improve their understanding. When researchers obtained blood samples from Henrietta’s family to establish genetic markers for HeLa, the Lacks family thought they were being tested for cancer (Skloot 180–4). More alarmingly, the resulting study published Henrietta’s name with her genetic information (Skloot 197–8). And more medical information was revealed about Henrietta without consulting the Lacks family. In the 1980s, her medical records were published, something which caused immense grief for Henrietta’s daughter, as Deborah read intimate details about her mother’s diagnosis and the anguish she suffered before her death (Skloot 209–10). Other family members, however, were angered by the profits made by biomedical companies while their family remained impoverished and could not afford health insurance (Skloot 168, 193).

Thoughtfulness and Modern Ethics

And this is perhaps the most concerning theme that The Immortal Life of Henrietta Lacks reveals: thoughtlessness. Mary Kubicek was an assistant who was sent to collect tissue samples during Henrietta’s autopsy in 1951. Unaccustomed to dealing with dead bodies, she focused her gaze away from Henrietta’s eyes. Then, she noticed Henrietta’s painted toenails and realized that Henrietta was an actual person, not just a collection of cells. It was something she had not considered before. It’s astonishing how many researchers (most but not all of whom were white) echoed this refrain and never thought about whether patients and/or their families might have concerns, even after ethical standards were changed. And this best represents what was most needed here, for researchers to think of Henrietta Lacks as a human with rights instead of as HeLa’s source. To think of all patients involved in research as people first.

* * *

Originally, I intended to end where the book does, with the emphasis on the need to see patients as people instead of mere study subjects. Instead, I discovered something of an unpleasant (if unsurprising) postscript: the Lacks family again needed to protest the public distribution of information about Henrietta. In 2013, the European Molecular Biology Laboratory published the genome of a line of HeLa cells to an online database that allowed public downloads of this data. Although no laws were broken (Callaway 2013), it seems the researchers did not consider the ethical implications of making genetic data  publicly available that could be potentially reveal private information about Henrietta’s family (Skloot 2013). The database subsequently was removed and the National Institutes of Health, who also planned to publish a similar paper, established a review board (that includes two of Henrietta’s family members) to determine who will gain access to this genetic information in the future (Zimmer 2013). While this hopefully will provide Henrietta’s family with much needed closure on this topic, questions remain about how geneticists should handle such sensitive data for other patients.

What response did you have to Henrietta’s story? Share it below in the comment section. Also, sign up for the Sequence’s newsletter and keep current with the latest posts.

NOTES:

[*] Elsie Lacks, Henrietta’s daughter, resided at a facility for mentally ill patients where medical experiments were carried out on the African-American patients living there, again without consent. She likely was a study subject. She died in 1955 (Skloot 274–6).

[†] HeLa also played a role in the formation of these boards. The discovery that researcher Chester Southam had been injecting HeLa cells into patients (roughly half of whom were diagnosed with cancer) without disclosure and consent caused a scandal that prompted the National Institutes of Health to create these boards (Skloot 127–36).

[‡] This study’s notoriety primarily stems from (but is not limited to) the fact that researchers purposefully withheld treatment from patients afflicted with syphilis long after a cure was developed in 1947. Ultimately, most patients died terribly, with many having infected both wives and children (Skloot 50, “Tuskegee Syphilis Study” 2017, CDC 2017).

Works Cited

Callaway, Ewen. “HeLa Publication Brews Bioethical Storm.” Nature (2013): n. pag. http://www.nature.com/news/hela-publication-brews-bioethical-storm-1.12689.

Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 08 Dec. 2016. Web. 25 Feb. 2017. https://www.cdc.gov/tuskegee/timeline.htm.

“Tuskegee syphilis experiment.” Wikipedia. Wikimedia Foundation, 20 Feb. 2017. Web. 25 Feb. 2017. https://en.wikipedia.org/wiki/Tuskegee_syphilis_experiment.

Glasser, Hana. “An Adorable Swedish Tradition Has Its Roots in Human Experimentation.” Atlas Obscura. N.p., 04 Jan. 2017. Web. 25 Feb. 2017. http://www.atlasobscura.com/articles/an-adorable-swedish-tradition-has-its-roots-in-human-experimentation.

Skloot, Rebecca. The Immortal Life of Henrietta Lacks. New York: Broadway Paperbacks, 2011.

Skloot, Rebecca. “The Immortal Life of Henrietta Lacks, the Sequel.” The New York Times. The New York Times, 23 Mar. 2013. Web. 26 Feb. 2017. http://www.nytimes.com/2013/03/24/opinion/sunday/the-immortal-life-of-henrietta-lacks-the-sequel.html?_r=0.

Sparks, Joel. Timeline of Laws Related to the Protection of Human Subjects. National Institutes of Health, U.S. Department of Health and Human Services, n.d. Web. 25 Feb. 2017. https://history.nih.gov/about/timelines_laws_human.html.

Zimmer, Carl. Zimmer, Carl. “A Family Consents to a Medical Gift, 62 Years Later.” The New York Times. The New York Times, 07 Aug. 2013. Web. 26 Feb. 2017. http://www.nytimes.com/2013/08/08/science/after-decades-of-research-henrietta-lacks-family-is-asked-for-consent.html.

“Hidden Science” in the Writings of Franklin & Conan Doyle

Men of method: Franklin and Conan Doyle

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Benjamin Franklin. By Joseph Duplessi [Public domain], via Wikimedia Commons.
It was my first year of graduate studies, and I found myself re-reading The Autobiography of Benjamin Franklin. Some time had passed since I read this book in depth,[*] but certain portions remained clear enough in my mind, including Franklin’s ambitious and tongue-in-cheek project to acquire virtues in Part II.[†] As I read through this section, I felt a growing sense of familiarity that was related less to the content and more to the structure of the writing. Franklin’s project followed a pattern that I’d become familiar with while pursuing that other undergraduate degree:[‡] scientific methodology. Reading Part II of The Autobiography was not unlike reading a scientific paper: there was a section on the background and the project’s goal (“moral Perfection”; Franklin 1383), defined terminology, methods delineated (working on acquiring a single virtue on a weekly basis and recording instances of success/failure); results presented and discussed, and a conclusion or two (Franklin 1383–91), ranging from “I think I like a speckled Ax best” (Franklin 1390) to:

But on the whole, tho’ I never arrived at the Perfection I had been so ambitious of obtaining, but fell far short of it, yet I was by the Endeavour made a better and a happier Man than I otherwise should have been, if I had not attempted it (Franklin 1391).

Obviously, the project to acquire virtue wasn’t, per se, a scientific experiment, but it bore the hallmarks of one.

Elated that I observed something I previously hadn’t noticed, I wrote my short paper for the upcoming class with a reference to my discovery and mentioned it during my brief presentation. I, however, did not expect to be asked which approach to the scientific method had Franklin favored. My professor posed an excellent question, considering that the 17th and 18th century scientific thinkers were in the process of disputing more ancient methods (namely, Aristotelian) for deriving facts (Weinberg 201-14).[§] I, however, knew more about applying the basics of scientific methodology than its history.

Awkward.[**]

Sir Arthur Conan Doyle. Photo by Walter Benington (RR Auction) [Public domain], via Wikimedia Commons.
Curiously, though, this experience—that is, the feeling I’d come across a familiar format— recurred when I re-read A Study in Scarlet for a recent post. Again, I felt as though I was reading about Sherlock Holmes conducting a scientific study in which he carefully observed the crime scene’s grounds (Conan Doyle 23–4), collected data (measurements at the murder site as well as examination of the murder victims; Conan Doyle 26, 29, 56–7), and even tested his theory that the first murder victims was poisoned (Conan Doyle 58–9). But, there it was: a sort of literary déjà vu featuring the scientific method. While I’m sure I understood that Holmes was both methodical and logical in his approach to detection, I doubt I noted the specific scientific underpinnings in Holmesian detective fiction when I was reading the stories in my early teens. It doesn’t seem like the sort of thing I would have considered independently when I was intent on consuming as many mystery novels as I could. And I certainly didn’t have the same ability to read critically as I do now.

Of course, detecting  the presence of scientific ideas in the writings of scientific men (Franklin, a scientist and inventor, and Conan Doyle, a medical doctor) isn’t unexpected, particularly with two individuals whom share the distinction of forwarding scientific study. Conan Doyle’s fiction anticipated the usage of methods that would become central in forensic sciences (eg, preserving footprints, protecting the crime scene from contamination)[††] and inspired forensic science pioneers like Edmond Locard (Steenberg 35).[‡‡] In Franklin’s case, the study of electricity benefited greatly from his attention to it (Chaplin), to put it mildly. Nonetheless, uncovering these connections between very different people writing for very different purposes was satisfying. I wouldn’t go so far to claim that I’ve seen further than some, but perhaps further than I once did.[§§] And I do feel a bit like a sleuth for detecting evidence of scientific thought.

Have you experience literary déjà vu or found some interesting scientific ideas in unexpected texts? Share your experiences below! Also,  sign up for the Sequence’s newsletter and keep current with the latest posts.

NOTES:

[*] High school to be exact.

[†] Spoiler: It’s my favorite part.

[‡] For the curious, I have an undergraduate degree in Literature and one in Environmental Studies.

[§] Numerous sources discuss this critical change in scientific thinking, including the one I cite here (as a physicist, he brings an interesting perspective to exploring this history ). The scientific methodology has a long history and, of course, will continue to evolve as scientific discoveries and thought require it to do so. The link I provide depicts a concise timeline of important known events, dates, and person contributing to this evolution.

[**] Based on my limited research, I’d (tentatively) go with Francis Bacon. Franklin already was familiar with the self-improvement plans of notable intellectuals, including Bacon who was likely the most influential (Lemay 39). Considering that Bacon favored experiments to establish facts (empiricism), I think this dovetails neatly with Franklin’s process here. Oh, and not having an answer didn’t have any negative consequences for my classwork; it was just embarrassing.

[††]  Holmes use of footprint evidence seems amazingly prescient when you consider the SoleMate database of shoe prints.

[‡‡] He apparently encouraged his students to read Holmes stories.

[§§] I’m cheekily referencing Newton’s famous quote: “”If I have seen further, it is by standing on the shoulders of giants.”

Works Cited

Chaplin, Joyce E. “Benjamin Franklin’s Science—In Public and Private.” Benjamin Franklin’s Science—In Public and Private. N.p., n.d. Web. 27 Jan. 2017. http://www2.avs.org/benjaminfranklin/chaplin.html.

Conan Doyle, Sir Arthur. Sherlock Holmes: The Complete Novels and Stories, Volume 1 and 2. 1920. Reprint. New York: Bantam Classics, 2003. Print.

Franklin, Benjamin. The Autobiography. In: Franklin, Benjamin. Writings. Ed. J. A. Leo Lemay. New York, NY: Literary Classics of the United States, 1987. Print.

Lemay, J. A. Leo. The life of Benjamin Franklin: printer and publisher, 1730–1747. Vol. 2. Philadelphia, PA: U of Pennsylvania Press, 2006. Print.

Steenberg, Lindsay. Forensic science in contemporary American popular culture: gender, crime, and science. New York: Routledge, 2013. Print.

Weinberg, Steven. To explain the world: the discovery of modern science. New York: Harper, 2015. Print.