From vaccines to disease treatments, behind each successful medical breakthrough is a complex research process that ensures the administration of new medical practices will be effective. At the heart of medical research is the need to test on a model that mimics the subject of interest. For humans, this may take the form of computer simulations, animals with similar biological mechanisms, human samples, and eventually, actual humans. Out of the options, human testing inevitably is the most effective in the development of medical practices, yet it carries one major caveat: the possibility of harm to a subject. The number of outcomes that can result from implementing a new medical practice is why human testing requires heavy amounts of consent screening, but the issue is that if human consent was required at each part of the research process, the rate of medical breakthroughs would be substantially hindered. Humans wouldn’t be able to overcome breakdowns in health if not for the ongoing and efficient process of research and much of this originates from the ability to test on cell lines outside of the human body.
To avoid the need and risk of constantly testing on human subjects, medical researchers use laboratory-grown human cells to study cellular processes outside of humans. These cell lines require two main elements. First, they must be the same throughout experiments to enable scientific reproducibility or the ability of different scientists to replicate other research. For the cell lines to be the same, it also requires a cell line to grow indefinitely so it can be used universally Fortunately, the HeLA cell line exists to fit these requirements and has enabled researchers to achieve a number of successes such as the polio vaccine, drug development for HIV/AIDS, and furthering of cell research technology.
HeLa cells were the first line of “immortal cells” that could multiply continuously, and therefore be studied infinitely by researchers, even today. Immortal cells are defined as those with the ability to divide and create new cells without dying. This differs from all of the body’s normal cells that experience aging to where cells will eventually die at varying times depending on the cell [1]. Prior to the early 1950s, researchers had attempted to grow human cell lines but encountered little success as the cells could not sustain themselves and divide for more than a few weeks [2]. This made the development of HeLa cells even more revolutionary for medical research, but because they are human cells, their origin becomes an apparent issue when evaluating the ethics of HeLa cells.
The root of HeLa cells are written in the name, as HeLa is abbreviated from the first two letters of the full name Henrietta Lacks. Henrietta Lacks was a 31 year old Black woman being treated for cervical cancer, and while receiving treatment a biopsy sample of her cells was secretly taken and studied by Dr. George Gey without her consent. At the time, John Hopkins Hospital was a part of the few hospitals that would treat poor African-Americans, but the large disadvantage was that biospecimen exploitation increased due to the prevalence of racial prejudice at the time [3]. Regardless of the treatment she received, Lacks passed away in 1951. After, Dr. Gey discovered her cells could multiply and live infinitely, establishing a timeless line of cells that could be used for a variety of research purposes [4]. For the research field, this was a massive breakthrough and significantly convenient, yet for the Lacks family, the repercussions demonstrate the great hazard of uninformed consent.
While John Hopkins claims that they had not profited from HeLa cells, this doesn’t mean that her unethically sourced cells haven’t been used in a capitalistic manner [5]. Since discovery, HeLa cells have initiated the multimillion dollar industry of producing and selling cell lines. One vial of HeLA cells can sell for just over $2000 [6]. The one-sided nature of the HeLa cell business becomes clear when the financial situation of the Lacks family is considered. While HeLa cells were passed around within research communities, the Lacks family lived in poverty and could not afford basic health insurance. Compensation for Henrietta’s cells never came to the family, and it wasn’t until 1971 where the family began to somewhat understand what Henrietta’s cells were truly being used for [6]. Only recently has the family received a say in how the cells are used such as approving researchers’ full access to Henrietta’s genome data [7]. However, the usage of HeLa cells and lack of compensation for the Lacks family is still ongoing as the Lacks estate filed a lawsuit against ThermoFisher Scientific Inc. in October 2021 for continuing to commercialize HeLa cells [8]. The contrast between the benefits of scientific discovery and dark origins of HeLa cells bring upon ethical questions if utilitarianism should be used and accepted in the case of consent of human samples.
The idea of “utilitarianism” focuses on the idea that ultimately the “greater good” is worth more at the expense of few individuals. Though revolutionary medical achievements have been made with the use of HeLa cells, her case brings the problem of uninformed consent and the power that researchers have over their patients if used wrongfully. Even if the world benefits, we cannot deem this type of behavior acceptable because it allows much more complicated issues to arise. For example, biobanks are storage facilities that contain human biological material used in medical research, and generally, do not receive enough samples because patients do not willingly donate their genetic material often. However, this does not stop the collection of human samples for biobanks due to lack of regulations [9]. Not only does this mean that those in higher power are using the resources of others for their own personal gain, but the other danger behind this is the leaking of confidential, important genetic information for several individuals. DNA is what makes each human distinguishable from the other, yet giving the wrong person with malicious intent this information can make legal matters extremely difficult.
The same matter has plagued the debate over publicly publishing patient genome sequences for research. Genetic information can affect someone’s ability to access financial backing, certain educational opportunities, or even eligibility for adoption. For instance, in cases of finance, access to genetic information may cause insurance companies to underwrite individuals as genetic information can suggest an individual’s future health prospects. The same applies to other circumstances where having an idea of someone’s genetic information can be easily exploited. Because genetic material defines each person’s identity, some of the worst possibilities public genetic material can open is the opportunity of identity theft and appropriation of people of color such as in Lacks’ case. The repercussions of uninformed consent for the broad outlook of society are simply much greater than the “good” of curing several diseases. Though, the root of the problem is from regulation of biospecimens, as it is not only Lacks who has fallen victim to the greed of the medical research industry. When the government ignores this behavior, they are indirectly allowing injustice to manifest itself in the system. Legally, the situation that allowed doctors to take Lacks’ cell line today can still occur.
As of now, the only effective regulation on collection of biospecimens and consent is for when live samples are specifically being used for research initially. For this, the patient must consent and a plethora of processes, such as IRB (Institutional Review Board) oversight, are required before researchers can go forth with their project. However, if biospecimens were already collected for a different initial use such as treatment in medicine, they can be used for research without consent [10]. The reason this is possible is that specimens can only be used if they cannot be tied to the original patient, but there is no guarantee how regulated the anonymity of a patient is at that stage of biospecimen collection. If a researcher wanted to know the origin of a biospecimen, loopholes from loose regulation may allow for exploitation of someone’s genetic information. This brings upon several issues and puts those with diseases or cancer at risk for falling to the same exploitative fate as Henrietta Lacks.
The most urgent change in this matter is making policy changes that require patient consent when any biospecimen is required, regardless of use. Even more IRB review could be used to ensure that the biospecimens are used in a manner not only approved by the patient but in a way that can benefit the patient. It is worthwhile to mention how certain regulations may slow the research process down, yet if proper communication is employed between the researcher and patient, projects can be carried out without much delay [11].
Cells make up the entirety of our identity, and to buy and sell that portion without compensation is beyond the ethical standards we should have. It is our priority to ensure those who can regulate this process—the government and other leaders—act more to protect patients in lieu of researchers. There is no need to place the overbearing desire to satiate the undying curiosity of researchers at the expense of humanity.
References
(1) Freeman, Shanna. "How HeLa Cells Work" 10 September 2012. HowStuffWorks.com. <http://science.howstuffworks.com/life/cellular-microscopic/hela-cell.htm> 21 December 2014.
(2) Nott, Rohini, "HeLa Cell Line". Embryo Project Encyclopedia (2020-09-18). ISSN: 1940-5030 http://embryo.asu.edu/handle/10776/13166.
(3) Butanis, Benjamin. “Role of the Johns Hopkins Hospital: Johns Hopkins Medicine.” Role of The Johns Hopkins Hospital | Johns Hopkins Medicine, 18 Feb. 2022,
https://www.hopkinsmedicine.org/henriettalacks/role-of-the-johns-hopkins-hospital.html.
(4) Pratt, Elizabeth, "The Medical Ethics of HeLa Cells (2020-2021)" (2020). Research Inquiry. 4.https://digitalcommons.cortland.edu/rhetdragonsresearchinquiry/4
(5) Butanis, Benjamin. “The Legacy of Henrietta Lacks.” Johns Hopkins Medicine, Based in Baltimore, Maryland, 18 Feb. 2022, https://www.hopkinsmedicine.org/henriettalacks/.
(6) “T-Rex™-Hela Cell Line.” Thermo Fisher Scientific - US,
https://www.thermofisher.com/order/catalog/product/R71407?SID=srch-srp-R71407#/R71 407?SID=srch-srp-R71407.
(7) Biography.com Editors. “Henrietta Lacks Biography.” Biography.com, A&E Networks Television,
https://www.biography.com/history-culture/henrietta-lacks#:~:text=The%20Lacks%20family %20learned%20about,genetic%20information%2C%20were%20largely%20ignored.
(8) “NIH, Lacks Family Reach Understanding to Share Genomic Data of Hela Cells.” National Institutes of Health, U.S. Department of Health and Human Services, 15 Sept. 2015, https://www.nih.gov/news-events/news-releases/nih-lacks-family-reach-understanding-share-g enomic-data-hela-cells.
(9) Press, The Associated. “Henrietta Lacks' Estate Sued a Company Saying It Used Her 'Stolen' Cells for Research.” NPR, NPR, 5 Oct. 2021,
https://www.npr.org/2021/10/04/1043219867/henrietta-lacks-estate-sued-stolen-cells.
(10) Nisbet, Matthew C., and Declan Fahy. “Bioethics in Popular Science: Evaluating the Media Impact of The Immortal Life of Henrietta Lacks on the Biobank Debate.” BMC Medical Ethics, vol. 14, Feb. 2013, p. 10. EBSCOhost, doi:10.1186/1472-6939-14-10.
(11) “Informed Consent.” BBRB, https://biospecimens.cancer.gov/bestpractices/elp/ic.asp. (12) Tomas Klingstrom, Erik Bongcam-Rudloff, Jane Reichel, Legal & ethical compliance when sharing biospecimen, Briefings in Functional Genomics, Volume 17, Issue 1, January 2018, Pages 1–7, https://doi.org/10.1093/bfgp/elx008.