Henrietta Lacks’s name is familiar to any scientist in the field of biology and medicine. Her cells were used to produce the famous cell culture “HeLa,” which became research material for many scientists worldwide (Curtis, 2016). However, her case is known not only for the consequent scientific breakthrough but also for the controversy it presents from the ethical perspective, as the cells were researched without the patient’s consent and knowledge.
Even though the cells were used for the greater good and helped many people, it is arguable whether the goal justifies the means in this case. On the one hand, Dr. Gey did not strictly break any rules, as, at that time, informed consent for the use of the tissues for research was not required (Biographics, 2018). The concept of informed consent was first legally acknowledged only in 1957, six years after Henrietta Lacks died (Skloot, 2010). Moreover, Dr. Gey’s research resulted in a scientific breakthrough that allowed scientists to “test and develop the polio vaccine, chemotherapy, cloning, gene mapping, and in vitro fertilization” (McCullough, 2019, p.253). Thus, Dr. Gey’s actions might seem justified at first glance.
On the other hand, rules and laws exist for a reason, and their breach leads to negative consequences. First of all, a lack of ethical regulations may deteriorate medical services’ quality. As Kemet (2019) put it, some doctors view their patients as a body that is potentially valuable for “future scientific discovery,” not someone in need of care (p.801). It affects the patient’s psychological state and negatively impacts their overall state. I believe that doctors should always do their best to treat their current patients in need of immediate care and help before thinking about some hypothetical value their case may have for further research. Informed consent, thus, seems a necessary measure to ensure the patients do not feel like objects with no feelings, dignity, and control.
Secondly, the lack of requirement to obtain informed consent before procedures or utilizing the patients’ biological material leads to discrimination against some patients. Henrietta Lacks’s case illustrates how doctors overlooked their patients’ complaints or did not give her full information on the procedures because she was black, poor, and uneducated (Skloot, 2010). Obtaining informed consent implies that doctors must explain the essence and possible risks to the patients, regardless of their social status, literacy level, and ethnicity. In brief, this measure aims to minimize discrimination against patients.
Finally, sometimes the researchers ask for the patient’s consent, but it may be too narrow to include all the research directions. Consequently, the patients might be associated with the studies they do not want to. According to Russo (2018), using cells with the patient’s genetic material and publishing the research reports with their genetic information without explicit, broad, and informed consent is regarded as a breach of privacy. Thus, asking for informed consent is an important step in any medical research and should not be overlooked under any pretext.
Since the situation is quite controversial, it is difficult to say what I would do if my cells or tissues were used for research without my consent. If a researcher approaches me and informs me of how I can contribute to a useful study, I would not mind helping. However, I would want to know the essence of the study, the way my genetic information would be used and whether it would be published, and in what form. Moreover, I would prefer to make a conscious decision to help the researchers and be aware of the research results instead of being treated like an inanimate object. Thus, I do not think I would want any compensation as I was not the one who did the actual research. However, I would demand full information on how my cells were used and whether there are any risks, it would affect me in any way.
However, I cannot speak for the Lacks family or people like Henrietta, who were deprived of any information on the research and an opportunity to demand compensation for their unconscious input in science. According to Charlier (2016), many medical researchers believe once the tissue is taken from the patient, it no longer belongs to them. Another argument is that it would be difficult to track each donor and pay them the compensation if the research has any monetary gain (Charlier, 2016). These arguments would be convincing if biological material did not comprise the patients’ genetic information, and its use in research would not violate their privacy and affect both the patient and their families. As Russo (2018) pointed out, some genetic discrimination cases have already been documented concerning employment and health insurance coverage. Therefore, the Lacks family has the right to demand compensation, at least for the public presentation of their genetic information without their knowledge and consent.
In conclusion, Henrietta Lacks’s case comprises valuable ethical lessons for researchers. It shows the importance of informed consent for all the procedures and the further use of obtained results and biological materials. Specifically, it highlights the significance of the patient-oriented treatment approach when a doctor views the patient as a human being, respects their privacy and opinion, and does not regard them as a body for research. Therefore, this woman’s story should be considered a reminder of the importance of ethical aspects in treatment and medical research.
References
Biographics. (2018). Henrietta Lacks the immortal woman [Video]. YouTube. Web.
Charlier, P. (2016). A dead body and living body: The genetic post-mortem life of Henrietta Lacks. Ethics, Medicine and Public Health, 2(3), 474–475. Web.
Curtis, A. (2016). The way of all flesh [Video]. YouTube. Web.
Kemet, S. (2019). Insight medicine lacks — the continuing relevance of Henrietta Lacks. The New England Journal of Medicine, 381(9), 800–801. Web.
McCullough, D. C. (2019). Metamorphosis and resurrection of Henrietta Lacks. Cultural Studies ↔ Critical Methodologies, 20(3), 251-260. Web.
Russo, K. (2018). The digital life of Henrietta Lacks: reforming the regulation of genetic material. Journal of Legal Medicine, 38(3-4), 449–470. Web.
Skloot, R. (2010). The immortal life of Henrietta Lacks. Crown Publishers.