Informed Consent in Immortal Life of Henrietta Lacks

Over the years, human biospecimen have played a significant part in scientific research as well as medical advances. However, ethical and policy issues linked to biospecimen remains a subject to scholarly debate. Wu et al. (2019) note that biospecimen studies raise questions related to cells collection, storage, privacy, usage, large data sharing and commercialization. Additionally, confidentiality issues arise. As Beskow (2016) notes in his work, biospecimen debate is a facilitator of policy change, including significant regulatory deviations in many countries, such as the US and the UK. In the last approximately seven decades, the recognition of the moral rights of clinical subjects to make informed consent is a significant development in research. Informed consent refers to obtaining permission before conducting a study on a human subject (Manti & Licari, 2018). Wu et al. (2019) define it as a procedure in which a clinical subject voluntarily provide his willingness to participate in a study. Manti & Liari (2018) also notes that informed consent is given after the participant receive and understands all research-related information. In nursing research, informed consent is an important topic that works towards protecting human participants from research-related risks.

Immortal Life of Henrietta Lacks book elicited widespread attention related to informed consent when undertaking a study involving human participants. The popular press then majored on three main themes, including informed consent, the welfare and compassion for the vulnerable and compensation of the human participants. Examples of themes that were discussed at a lesser degree include control and accountability. In Wu et al. (2019), the issue of privacy and informed consent when involving human participants in research is explored.  In a work that Wu et al. (2019) conducted, informed consent remains one of the most crucial aspects of research ethics. It also touches on both legal and ethical issues. In many countries, regulations to protect clinical subjects have been promulgated.

The basic ethical principle behind informed consent is to protect human subjects participating in clinical research (Manti & Licari, 2018).  In Rebecca Skloot’s book titled “The Immortal Life of Henrietta Lacks” chapter 3, Henrietta visits John Hopkins and is found to have cervical cancer (Skloot, 2011). Her cells are collected, stored, and studied, which raised profound questions about informed consent (Lyapun & Bynina, 2019). In addition, a physician by the name Southam used the HeLa cells to human participants without their knowledge. Firstly, he injected the cells to patients who developed tumors as it will be explored further below. In addition, he used the cells on prisoners. His actions were against the Nuremberg Code of ethics. The use of clinical subject cells without his/her knowledge or family’s is also not only illegal but also unethical.

Many people may not know Henrietta Lacks. However, her cells have saved many countless lives. Her cells are behind the development of numerous vaccines, including polio, cloning, and cancer treatments. Until the 1970s, patients in the United States would get surgeries, among other medical procedures without consent (Nijhawan et al., 2013). In Henrietta’s case, for example, her cells were drawn from her body without informed consent. After the birth of her son Joseph, Henrietta started bleeding and diagnosed with cervical cancer. The book notes that she was treated through radium tubes, but in one of her radiations, the physician took two samples of cells that were removed without her consent. After many attempts to multiply them, Dr. George Gey separates one specific cell, multiplies it, and starts a cell line without Henrietta Lacks informed consent. At 31 years, she succumbed to cervical cancer. Unlike many other people’s cells, her cells not only lived for long but grew continuously in culture.

Henrietta cells’ story remains an ethical trade-off where the scientific community grapples with their selfish pursuit and not minding the participant’s well-being (Nijhawan et al., 2013). Since HeLa cells discovery, beneficiaries have sold for incalculable profit. However, Henrietta never benefitted, and even her family could not afford health insurance because of their chronic illnesses afterwards. HeLa cells were harvested in 1951 when she died. Unfortunately, the family never came to know of it until 1971.

In addition to extracting Henrietta Lacks cells without her consent, Dr. Chester Southam used them on patients without their informed consent. In 1954, he injected HeLa cells on cancer patients to check whether their immune systems would reject them. When tumours started growing in their body, Southam removed them. Such an action is against the Nuremberg Code of ethics. Even after realizing that the HeLa cells were responsible for the tumors and the patient’s health was deteriorating, he went ahead to look for another vulnerable group. He later injected the cells on prisoners without their informed consent. In subsequent years, he managed to inject HeLa cells to approximately 600 patients without their knowledge (Nijhawan et al., 2013). These participants experienced many symptoms, including tumors, body weaknesses, among others. In 1963, Southam requested to inject the cells on Brooklyn Hospital for Jewish Chronic Diseases patients. However, the organization’s physicians refused since they understood the Nuremberg Code of ethics. The story behind Henrietta Lacks cells is a springboard to policy change and especially things related to informed consent (Beskow, 2016).

Over the years, the element of informed consent remains an important element in clinical trials. Physicians are not permitted to extract people’s genetic samples or even tumour cells without consent from study participants (Wu et al., 2019). In any nursing research involving human participants, people should voluntarily make decisions to participate in it. Such a decision is made after a good understanding of the study’s procedure, dangers, and benefits. The participants also have the right to withdraw from the research if they feel uncomfortable. Once they present their intentions to withdraw, they should not be punished in any way. On examining Nijhawan et al. (2013) work on informed consent topics, study-related informed consent premised well-established ethical ideologies that include justice, beneficence, and respect to persons. In the US, Federal rules and regulations were developed with intentions to respond to extreme research abuses and especially on vulnerable populations (Beskow, 2016). The main aim of these regulations is to protect human participants from risks related to research.

In summary, human biospecimen has contributed to scientific research and medical advances over the years. The above analysis has proved that ethical and policy issues linked to biospecimen still elicits a scholarly debate and the strong attention of a broader audience. In many countries, biospecimen debate is a catalyst for policy change, and in the US, Federal regulations are primarily protecting human participants in ensuring their safety. In “The Immortal Life of Henrietta Lacks” work, HeLa cells were collected, stored, and studied void of Henrietta’s or her family’s informed consent, which is unethical.

References

Beskow, L. (2016). Lessons from HeLa Cells: The Ethics and Policy of Biospecimens. Annual Review of Genomics and Human Genetics, 17(1), 395-417. https://doi.org/10.1146/annurev-genom-083115-022536

Lyapun, I., A, B., & Bynina, M. (2019). HeLa cell Culture: Immortal Heritage of Henrietta Lacks. Molecular Genetics, Microbiology, and Virology, 34(4), 195-200. https://doi.org/10.3103/s0891416819040050

Manti, S., & Licari, A. (2018). How to obtain informed consent for research. Breathe, 14(2), 145-152. https://doi.org/10.1183/20734735.001918

Nijhawan, L., Udupa, N., Bairy, K., Bhat, K., Janodia, M., & Muddukrishna, B. (2013). Informed consent: Issues and challenges. Journal of Advanced Pharmaceutical Technology & Research, 4(3), 134. https://doi.org/10.4103/2231-4040.116779

Skloot, R. (2011). The immortal life of Henrietta Lacks. New York: Broadway Paperbacks.

Wu, Y., Zhou, C., Hu, M., & Cong, W. (2019). Reporting of ethical approval and informed consent in clinical research published in leading nursing journals: a retrospective observational study. BMC Medical Ethics, 20(1). Doi: 10.1186/s12910-019-0431-5