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.

Public Reading: For the Love of Libraries

We were book lovers, so we went to the library as often as we could: After all, it felt like another home.

“I always knew from that moment, from the time I found myself at home in that little segregated library in the South…I always felt, in any town, if I can get to a library, I’ll be OK.” –Dr. Maya Angelou[*]

As a child, I inhabited my hometown’s library. I swept through the familiar stacks, seeking books I hadn’t yet read or favorites to re-read. In the background, I could overhear my mother discussing my reading level with the children’s librarian. The same librarian hosted the story hour. She’d sit nearly surrounded by a semi-circle of children, showing us the pages as she slowly read them aloud. Afterwards, I could check out as many books as I could carry—and I frequently needed to tuck the stack under my chin to avoid dropping them.[†] I finished roughly half of the books before my mother drove us home. We were book lovers, so we went to the library as often as we could: After all, it felt like another home.

Literary Libraries

Of course, I found echoes of myself in books featuring other bookworms and the libraries in which they lost themselves, the librarians which they befriended. My favorite part of Robin McKinley’s version of the Beauty[‡] and the Beast story involved reading.[§] The novel features a bookish heroine who marvels at the books she finds in the Beast’s library, some of which have not yet been written.[**] Considering how many times and how long I’ve waited for sequels to be published, I’m confident that this magical library is a bookworm’s dream. In the Discworld series, however, it’s not only possible to find books that have yet to be written but also to travel through time and to different places through L-space (that is, library space).[††] In some way, I’ve always felt this to be true of reading. How often had I found myself lost in book only to surprised when I became aware again of my actual surroundings? And these novels also feature the Librarian of the Unseen University, once a human wizard who found key advantages in being transformed into orangutan.[‡‡] Never saying much more than “Ook”, he manages to communicate his meaning all the same and he’s good to have on your side. His unique approach to helping is entirely in keeping with what I know of librarians, all of whom work hard to serve the public.[§§]

The Power of Real Libraries

And if libraries mean the world to a someone whose childhood was reasonably comfortable, imagine the difference they make to children with different backgrounds. Dr. Maya Angelou spoke of her first library as a soothing balm, the kind that helped her find her words again and her vocation. For another young woman, libraries acted as an equalizer. Although she could not afford to buy books the way her friends did, her free public library card permitted to read nonetheless. Even coming from a family that collected books, I know there’s many books I would not have read without this free access. And libraries don’t just hold books. Poet/filmmaker Greta Bellamacina shared that libraries provided a quiet place to study that her home lacked. Libraries provide safe places.

For these reasons, I feel dismay whenever I read about efforts to defund public libraries. Since I’d personally prefer that Fahrenheit 451 remain a work of fiction,[***] I urge readers to get out and support our community libraries and fund groups that protect libraries. I would like my child to continue reading all those books eagerly, after story hour, the way I did. I’d like all children to have that second home to visit.

Have a favorite librarian or library story? Share in the comments section! Or better yet, support your with a donation! Also, don’t forget to sign up to the Sequence’s newsletter and keep current with the latest posts.

NOTES:

[*] Library, The New York Public. “Interview: How Libraries Changed Maya Angelou’s Life.” The Huffington Post. TheHuffingtonPost.com, n.d. Web. 11 Feb. 2017. <http://www.huffingtonpost.com/the-new-york-public-library/interview-how-libraries-c_b_775980.html>.

[†] Naturally, this librarian also ran the summer reading program, which I read for the way some kids train for sports.

[‡] Technically, her name was Honour, but she got herself nicknamed “Beauty” as a young child by insisting she’d rather be called beauty. Of course, the name stuck, which made her awkward teen years so much more…awkward.

[§] McKinley, Robin. Beauty: a retelling of the story of Beauty & the beast. New York: Harper Collins Publishers, 1978.

[**] For the record, this novel predates the Disney film.

[††] Pratchett, Terry. Guards! Guards! New York: HarperTorch, 2001.

[‡‡] Obtaining books from the top shelves features highly on this list.

[§§] Although, their approach involves less implied violence.

[***] Not to mention The Handmaid’s Tale and 1984.

Setting the Table for Family Drama: Writing Dinnertime Conflict

When it comes to stirring the plot, the familial dining table provides numerous opportunities for writers to use this setting to do as much or as little as they need it to do.

Among the most commonly occurring and underrated settings employed in fiction is the dining table. The dinner table serves more than (hopefully) good eats: it provides both place and reason for characters to be together. Relatively few limits exist for such gatherings. The dinner table accommodates routine meals but also can expand (with a leaf or two) for a holiday party or become several tables at an awards ceremony. Locations also are flexible: I’ve recently set the opening of a story at a patio table during a birthday barbecue. Impromptu celebrations such as promotions, too, might result in an outing to a favorite restaurant. Since mealtimes can occur at any point in the plot, so long as it makes sense for people to eat, the dinner table represents one of the most versatile settings that writers can use to creates scenes, forward the plot, and/or explore the central problem of a story. While these tables can appear in innumerable story types, I will discuss how a few of my favorite authors set the table when writing about families.

Mischief Managed: Rowling’s Kitchen Table

For these stories, setting the action at the dinner table can be quite natural. After all, families often are urged to dine together: shared meals are touted for strengthening familial bonds as well as providing a host of positive benefits. And who wouldn’t want to dine with their loved ones? However, even tight-knit families experience their moments of discord. Featured prominently in the Harry Potter series, the Weasley family is considered a loving one.[*] Harry Potter’s first breakfast at their home, however, is rather tense. Concerned that Harry hadn’t replied to their letters, Ron, Fred, and George Weasley decide to use their father’s enchanted car to rescue Harry from his relations (it was a cloudy night) and sneak him into their home undetected. Unluckily for them, Mrs. Weasley observes both absent boys and car and upbraids all parties for their irresponsibility save the relatively blameless Harry. Mrs. Weasley is somewhat mollified when her sons tell her of Harry’s hardships, but she isn’t one to let them escape having any consequences because their intentions were good: they have chores to do. She sends them outdoors to sort out garden beds before they get the chance to nap. (Rowling 24–41).

Rowling accomplishes quite a lot in these pages besides removing Harry from an unpleasant situation (and thus moving the plot forward). Harry, long accustomed to his aunt’s and uncle’s tendency to condone and excuse his cousin’s bad behavior while punishing him for mere infractions, sees Mrs. Weasley appropriately scold her children for engaging in a risky activity. His subsequent meals at the Burrow, where he is welcomed at the table and in which Mrs. Weasley attempts to feed him up (the Dursleys begrudge him every morsel ), are new experiences for him.[†] Escaping to the Burrow introduces Harry to how loving families work. More telling, though, is the contrast that reader sees between Harry’s home life, which is arguably neater, wealthier, and unhappier (Rowling 1–42). Rowling underscores the point that judging people’s worth by mere appearances or their wealth is fallacious. What makes people worthy is the how they treat each other. It’s little wonder that Harry would rather spend his summers in the happy chaos of the Burrow.

Mystery, Misery and Murder at Christie’s Banquets

Manor house banquet tableFor unhappy families, however, the potential for tension at the table is extensive. Agatha Christie, a master of the manor house mystery, frequently seats her characters at a formal dining table. Since her mystery novels often involve the murder of a wealthy benefactor to various family members (money and resentment making excellent motivations), mealtimes can be quite intense. The dinner table, being an obliging sort,[‡] works as both setting and opportunity for narrative exposition. In “The Second Gong”,[§] dinner guests and family members alike almost race to the dinner table to ensure they arrive punctually because their host, Hubert Lytcham Roche, notoriously despises lateness. His tardiness is so unprecedented that his guests and butler are stunned and hardly know how to proceed. Shortly thereafter, they find Hubert dead. Here, the table works in two ways: it reveals aspects of Hubert’s character (his controlling, unyielding nature) and gathers all the principal suspects together. In A Pocket Full of Rye, however, the dining table serves as the murder scene: Rex Forestcue, a rather nasty man, is poisoned during breakfast whilst surrounded by suspects—er, family members—all of whom had both motive and opportunity to kill him. In novels such as The Mysterious Affair at Styles, Christie uses the dinner table to review the case and acquire background information: Captain Hastings, a guest at Styles Court, and Hercule Poirot discuss the murder of Emily Inglethop during breakfast on at least two occasions, which affords Poirot the opportunity to question persons present about events surrounding the murder (for which he was not present) and gather clues.

Gaiman: What the Monster Made for Dinner

Of course, not every family need be wealthy (or murderous) to be unhappily seated together at the table. From the outset of The Ocean at the End of the Lane, it seems clear that the seven-year-old protagonist’s parents don’t relate to their bookish boy. Neither mentions his kitten’s death after it occurred, not even to offer consolation. The boy doesn’t share his disappointment about receiving the unsuitable replacement cat with them, anticipating (correctly, I suspect) that his parents won’t understand that the hurt remained new cat or not (Gaiman 14–16). During another incident, his older self (who narrates the events) observes that he only consulted adults as a child when he absolutely must (Gaiman 63), suggesting that the boy already expects adults to be reluctant to help him. Understandably Gaiman’s protagonist is terrified when he realizes that his new childminder is an actual monster. He sits at the dinner table on two occasions, hungry but afraid to eat what the monster made for supper (Gaiman 82, 90–92). Beyond their immediate horror, these moments reveal a larger pattern in the novel: the powerlessness of children. It’s all too easy for the monster to portray the boy as truculent, making his protests seem…childish. The boy, already aware of how easy he is to discredit, knows he cannot expect his parents to believe or assist him. Gaiman captures this bitter aspect of childhood, its impotence, and allows it to be the force that drives his narrative by seating a child at a table.

Setting the Table for Family Drama

When it comes to stirring the plot, the familial dining table provides numerous opportunities for writers to use this setting to do as much or as little as they need it to do. It can serve as a mere setting, providing the appropriate backdrop to the story at hand or cleverly reveal information about characters. Often, scenes from a dining table allow writers to connect to larger themes they explore, both for their stories about families and elsewhere. As such, it might not be such a bad idea to set characters down for something to eat and see what happens next.

Do you have a favorite mealtime scene from a story or book? Share what you liked about it in the comment box below. Also, sign up for the Sequence’s newsletter and keep current with the latest posts.

NOTES:

[*] At this point, the Weasley family’s problems lie more with financial constraints and the odd personality clash versus actual deep disagreements with each other.

[†] Harry, much like Jane Eyre before him, represents a tragic form of the poor relation: the orphaned and presumed penniless child required to live under the guardianship of uncaring relations.

[‡] Unlike the murder victim.

[§] For anyone besides me experiencing a bit of literary déjà vu with this story, it’s useful to know that Christie later rewrote and expanded this story, which she called “Dead Man’s Mirror”. I’m working with the original because I like its simpler plot. Having said that, Christie’s work can feel familiar in places because she reuses elements such as nursery rhymes (“Sing a Song of Sixpence” is one I’ve noted in a few stories), themes, and motivations (typically, money).

Works Cited

Christie, Agatha. The Mysterious Affair at Styles: the First Hercule Poirot Novel. New York: Berkley , 1990.

Christie, Agatha. A Pocket Full of Rye. New York: Signet Book, 2000.

Christie, Agatha. “The Second Gong”. Witness for the Prosecution, and Other Stories. New York: Berkley , 1984.

Gaiman, Neil. The Ocean at the End of the Lane. New York, NY: William Morrow, an imprint of HarperCollins Publishers, 2016.

Rowling, J. K. Harry Potter and the Chamber of Secrets. New York: Arthur A. Levine , an imprint of Scholastic Press, 1999.