*Henrietta Lacks circa 1940s. Image Credit: The Henrietta Lacks Foundation.
My first encounter with the remarkable story of Henrietta Lacks occurred by total happenstance sometime in 2021. Since then, I have been nothing short of captivated by the short, tragic yet eminently impactful life of this “hidden figure” in biomedical research.
Background and Early Life
Henrietta Lacks, an African American woman, was born on August 1, 1920 in the state of Virginia, United States of America and died on October 4, 1951. She grew up in impecunious circumstances as one of ten (10) children birthed by her mother. During her childhood, Henrietta Lacks worked was as a tobacco farmer (which was not unusual for the time). She later had her first child in 1935 at around fourteen (14) years old. Following the birth of her second child in 1939, she married her children’s father on April 10, 1941, and went on to have other children, with the last of her five children being born in November 1950 at the Johns Hopkins Hospital in Baltimore, Maryland.
Collection and Harvesting of “HeLa” Cells
On or about January 29, 1951, Henrietta Lacks was admitted to the Johns Hopkins University Hospital due to what she believed to be a “knot” in her womb (Rebecca Skloot, The Immortal Life of Henrietta Lacks (Random House, New York City 2010)), as well as periods of “abnormal bleeding” (Rebecca Skloot, ‘An Obsession with Culture’ (University of Pittsburgh, March 2001): (University of Pittsburgh: Pitt Magazine (archive.org)>). After being diagnosed with a malignant epidermoid carcinoma (cancer) of the cervix, Henrietta Lacks was treated with radium tube inserts as an inpatient and thereafter discharged. During those treatment sessions, two samples were taken from her cervix without her knowledge or permission. One sample was of healthy tissue and the other was cancerous (Rebecca Skloot, The Immortal Life of Henrietta Lacks (Random House, New York City 2010) at page 23). The samples were then passed on to George Otto Gey, who was the first researcher to have studied Lacks’ cancerous cells. He was stunned to discover that unlike the cells that he had been collecting from patients who had come to the Johns Hopkins Hospital with cervical cancer, the cancerous cells collected from Henrietta Lacks “doubled every 20 to 24 hours” leading him to conclude that her cells were “immortal” (Johns Hopkins Medicine, ‘The Legacy of Henrietta Lacks: Honoring Henrietta’: <The Legacy of Henrietta Lacks | Johns Hopkins Medicine>).
Lawsuits over “HeLa” Cell Line- A Question of Bioethics and Unjust Enrichment
Due to the circumstances under which the “HeLa” cell line was propagated by the Johns Hopkins Hospital, and particularly with no consent having been obtained from Henrietta Lacks and indeed no compensation having been provided despite the enormous profits gained through the exploitation of her cells, a suit was initiated on October 4, 2021 by attorney-at-law Ben Crump on behalf of the family of Henrietta Lacks against pharmaceutical giant Thermo Fisher Scientific. At that time, the crux of her family’s case was that “…Thermo Fisher Scientific continued to derive commercial benefit from so-called HeLa cells, which have been used in tens of thousands of scientific and medical studies, long after their unethical origins became known.” As such, the Lacks family had requested that Thermo Fisher Scientific compensate them, and had further beseeched the court for an order compelling Thermo Fisher Scientific to obtain their permission to engage in continued use of the HeLa cell line (Catherine Offord, ‘Henrietta Lacks Estate Sues Thermo Fisher over HeLa Cell Line’ (TheScientist, October 4, 2024): <Henrietta Lacks Estate Sues Thermo Fisher over HeLa Cell Line | The Scientist Magazine® (the-scientist.com)>). In response, Thermo Fisher Scientific, through their legal representatives, requested that the court dismiss the lawsuit filed on behalf of Henrietta Lacks’ family (See Craig LeMoult, ‘Thermo Fisher seeks dismissal of Henrietta Lacks’ family’s lawsuit regarding sale of her cells’ (GBH, May 17, 2022): <Thermo Fisher seeks dismissal of Henrietta Lacks' family's lawsuit regarding sale of her cells | GBH (wgbh.org)>). This lawsuit against Thermo Fisher Scientific was eventually settled in August of 2023 with the terms of the settlement remaining confidential (Will Sullivan, ‘Henrietta Lacks’ Family Settles Lawsuit Over the Use of Her Cells Without Consent’ (The Smithsonian Magazine, August 2, 2023): <Henrietta Lacks' Family Settles Lawsuit Over the Use of Her Cells Without Consent | Smithsonian (smithsonianmag.com)>)
Thereafter, the family of Henrietta Lacks, represented this time by her grandson Ron L. Lacks, instituted civil proceedings against yet another pharmaceutical company, Ultragenyx Pharmaceutical Inc. for its use of the HeLa cells for its own profit and without compensating the estate of Henrietta Lacks or seeking its permission to use the cells. In this instance, the family of Henrietta Lacks is seeking the disgorgement by Ultragenyx Pharmaceutical Inc. of its net profits from the commercialization of the HeLa cells and the permanent cessation by the company of any and all use of the HeLa cells without the estate’s permissions, among other remedies. Shortly thereafter, Ultragenyx Pharmaceutical Inc. filed a motion to dismiss the family’s lawsuit. However, on May 20, 2024, U.S. District Judge Deborah L. Boardman rejected Ultragenyx Pharmaceutical, Inc.’s motion, and found that it could plausibly be liable to Lacks’ family for unjust enrichment thereby permitting the family’s lawsuit to proceed (Rachel Konieczny, ‘Henrietta Lacks’ family can proceed in lawsuit against pharmaceutical company’ (The Daily Record, May 21, 2024): <Henrietta Lacks' family can proceed in lawsuit against pharmaceutical company - Maryland Daily Record (thedailyrecord.com)>).
This rather curious case raises, among other things, bioethics concerns, which center particularly on the biomedical ethics principle of respect for autonomy. In biomedical ethics, the principle of respect for autonomy emphasizes the importance of health care professionals recognizing and accepting that “the patient has the capacity to act intentionally, with understanding, and without controlling influences that would mitigate against a free and voluntary act.” This principle of respect for autonomy operates as the basis of the requirement of "informed consent" in the physician/patient health care transaction. (Thomas R. McCormick, ‘Principles of Bioethics’ (UV Medicine Department of Bioethics and Humanities): <Principles of Bioethics | UW Department of Bioethics & Humanities (washington.edu)>). In the case of Henrietta Lacks, consent was not obtained from her family for the harvesting of her cells as well as for their repeated use, commercialization and monetization in biomedical research. Importantly in this context as well is the fact that following the death of Henrietta Lacks, Dr. Gey instructed his lab assistant, Mary Kubicek to take further HeLa samples while Henrietta Lacks’ body was at Johns Hopkins' autopsy facility (Michael Gold, A Conspiracy of Cells: One Woman’s Immortal Legacy-And the Medical Scandal It Caused (SUNY Press 1986) at page 20). Once again, in this instance, the harvesting of the HeLa cells would have been done without any consent from her family and/or persons authorized to provide consent on her behalf thereby raising bioethics concerns regarding the undignified manner in which Henrietta Lacks was treated by Johns Hopkins Hospital both as a patient, at the time of her death and onwards with the repeated and arguably unauthorized use and exploitation of her cells to the complete exclusion of her estate/family thereby unjustly enriching themselves in the process.
Legacy
The largely obscured legacy of Henrietta Lacks and her “immortal” HeLa cells continue to impact medical science in remarkable ways almost seventy-three (73) years after her death. Indeed, the HeLa cell line has catalyzed several seminal breakthroughs in biomedical research and in medical science more generally. More specifically, the HeLa cell line has notably contributed to the development of the polio vaccine (Van Smith, ‘Wonder Woman: The Life, Death and Life After Death of Henrietta Lacks, An Unwitting Heroine of Modern Medical Science’ (City Paper, April 17, 2002): <Henrietta Lacks – Van Smith>); helped to inform important research on virology and in particular whether cancer could be transmitted and whether the development of an acquired immune response to cancer could cause a person to become immune to cancer, among other things (Ibid); and has even “…provided insights on the molecular mechanics of SARS-CoV-2019 and the components required for infection…” (See Noel Jackson, ‘Vessels for Collective Progress: the use of HeLa cells in COVID-19 research’ (Science in the News, September 4, 2020): <Vessels for Collective Progress: the use of HeLa cells in COVID-19 research - Science in the News (harvard.edu)>).
Over time, the increasing demand for HeLa cells by would see them being mailed to scientists world-wide to be utilized in conducting research into cancer, AIDS, gene mapping as well as into several other scientific endeavours (ibid). At present, there are thousands of patents are relating to the HeLa cells (See generally Denise M. Watson, ‘Cancer cells killed Henrietta Lacks—then made her immortal’ (the Virginian Pilot, May 10, 2010): Cancer killed Henrietta Lacks — then made her immortal – The Virginian-Pilot (pilotonline.com)>).
Today, Henrietta Lacks’ HeLa cells is still being utilized by medical and related institutions, including pharmaceutical companies, to pioneer breakthroughs in biomedical research. More recently, the Johns Hopkins Hospital released a statement indicating, among other things, that it “has never sold or profited from the discovery of the HeLa cells and does not own the rights to the HeLa cell line…” Instead, the John Hopkins Hospital maintains that it simply “offered HeLa cells freely and widely for scientific research.” It also conceded that ‘[h]aving reviewed our interactions with Henrietta Lacks and with the Lacks family over more than 50 years, we found that Johns Hopkins could have – and should have – done more to inform and work with members of Henrietta Lacks’ family out of respect for them, their privacy and their personal interests…’ The statement further elaborated that ‘[t]hough the collection and use of Henrietta Lacks' cells in research was an acceptable and legal practice in the 1950s, the laws protecting research subjects have evolved.’ (Johns Hopkins Medicine, ‘The Legacy of Henrietta Lacks: Honoring Henrietta’: <The Legacy of Henrietta Lacks | Johns Hopkins Medicine>).
Given the renewed interest in the story and legacy of Henrietta Lacks brought about by her family’s recent lawsuits over the HeLa cell line, it remains to be seen what if any compensatory measures will be offered to the family by the relevant actors and stakeholders that would have exploited, commercialized, and profited from the use of the HeLa cell line to the total exclusion of her family/estate over the course of many decades. The outcome of such cases will no doubt have cataclysmic implications for the landscape of medical science at the intersection of bioethics, law and racial justice in the years to come.
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