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Violations of Autonomy in Biomedical Research:

From the controversial origin of HeLa cells to the ethical acceptability of broad consent




In the continual pursuit of knowledge and discovery, biomedical research plays an essential role in the scientific community. It provides a method for understanding the complex biological and molecular mechanisms which underlie disease. It also acts as a platform to develop novel pharmacological, diagnostic, and therapeutic methods for applications in medical practice. However, challenges arise due to the heavy reliance on biological samples and methods by which these specimens are obtained. In the maintenance of ethics, privacy, and donor autonomy, it is critical that consent be obtained before the collection and usage of human biological samples for research.

Unfortunately, this was not the case for Henrietta Lacks—an African American woman whose cells were obtained without her informed knowledge or consent at Johns Hopkins Hospital in 1951 (World Health Organization, 2021). Lacks was receiving treatment for cervical cancer when tissue samples, for the sole purpose of research, were extracted from her cervix. Dr. George Gey went on to isolate and culture the cells in his laboratory, where he discovered their unique ability to divide indefinitely (Liverpool, n.d.).

Lacks sadly died at the age of 31, but her cells lived on. They became known as HeLa cells, the first immortalized human cell line, and were distributed internationally for their use in biomedical research. They have led to several Nobel Prize-winning discoveries, such as the development of vaccines against polio and the human papillomavirus (Liverpool, n.d.). Today, HeLa cells play a role in COVID-19 research and continue to make lasting contributions to the field of science (Jackson, 2020).

While it is appealing to solely observe the positive triumphs derived from HeLa cells, their tainted past must not be overlooked. The original biospecimen was extracted and utilized without the donor’s consent, or that of her family. While this was standard for that time of practice, it is now clearly understood, in today’s society, that a lack of obtaining consent is illegal. Therefore, in violation of ethics and donor autonomy, the extraction of HeLa cells is viewed as an act of injustice against Henrietta Lacks. To make matters worse, the Lacks family never received any recognition or financial compensation from the benefits reaped by the utilization of HeLa cells for research or commercial purposes (Lanese, 2021).

Thankfully, recent steps have been taken toward efforts of reconciliation. In 2021, The World Health Organization acknowledged the monumental contributions HeLa cells have made to modern medicine and honoured Henrietta Lacks with the Director General’s award (World Health Organization, 2021).

As with all historical wrongdoings, it is pivotal that we take efforts to learn from the mistakes of the past, such as those of the Lacks case, and instil proper regulations to prevent their repetition in the future. While it is now a requirement to obtain consent for the collection of any human biological material, there are debates regarding what modes of consent are required, especially with the emerging prevalence of biobank research.

Biobanks store human biological samples for their longitudinal use in research (Petrini, 2009). With one sample having the potential to be used in a variety of different studies, informed consent, in which a donor is fully aware of the aims and risks of the study, is no longer considered feasible. A researcher cannot provide full disclosure upon recruitment of a sample, as the conditions of various subsequent studies cannot be foreseen. This has given way to broad consent—a model for which continual, study-specific consent is not a requirement.

Questions have been raised as to whether broad consent is sufficient in the maintenance of ethics and donor autonomy. As seen with HeLa cells, the implementation of appropriate research guidelines is crucial in the avoidance of future implications and injustices. Calls for action are therefore required to address these changes regarding consent within the scientific community and preserve the integrity of biomedical research.



References

Jackson, N. (2020, September 4). Vessels for collective progress: The use of Hela cells in COVID-19 research. Science

in the News. Retrieved February 13, 2023, from https://sitn.hms.harvard.edu/flash/2020/vessels-for-collective-

progress-the-use-of-hela- cells-in-covid-19-research/

Lanese, N. (2021, October 7). Henrietta Lacks' family sues biotech firm for use of 'stolen' cells. LiveScience. Retrieved

January 30, 2023, from https://www.livescience.com/henrietta-lacks-hela-cell-lawsuit-thermo-fisher

Liverpool, L. (n.d.). Henrietta lacks. New Scientist. Retrieved January 30, 2023, from

https://www.newscientist.com/people/henrietta-lacks/

Petrini, C. (2009, October 21). "broad" consent, exceptions to consent and the question of using biological samples for

research purposes different from the initial collection purpose. Social Science & Medicine. Retrieved January 30,

2023, from https://www.sciencedirect.com/science/article/abs/pii/S0277953609006662?via%3Dih ub

World Health Organization. (n.d.). Henrietta lacks: Recognizing her legacy across the world. World Health Organization.

Retrieved January 30, 2023, from https://www.who.int/news-room/events/detail/2021/10/13/default-

calendar/henrietta -lacks-recognizing-her-legacy-across-the-world

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