Henrietta Lacks DB
COLLAPSE
In the case of Henrietta Lacks, the research principle of informed consent was violated. As summarized by Beskow 2016, “Tissue samples were taken during her diagnosis and treatment, and portions were passed along to a researcher without her knowledge or permission.” These cells have gone on to live indefinitely and be used in research for decades, unbeknownst to her family for many of those years. Informed consent is where a health care provider educates patient, deemed competent to make decisions about their healthcare, about the benefits, risks, and alternatives to a procedure or intervention. Henrietta’s story helped propel the process of informed consent into law years later. The Joint Commission now requires documentation of informed consent in patients’ health records, too (Shah et al. 2022).
I believe race and social class absolutely played a role in how Henrietta and her family were treated as they did not benefit from or even know about the research for many years. As mentioned by Skloot 2010, when researchers attempted to contact and inform her family about her cells being used in a labaratory, they did not take into consideration the family’s education level and access to information regarding research and scientific principles, thus creating a massive communication barrier and distrust between the scientists and the family. Also, while the HeLa cells were being given away freely and used to lucrative medical discoveries, the Lacks family was living under the poverty line and could not even afford health insurance. Furthermore, Henrietta’s story not only raised awareness of the importance of informed consent, but also in upholding the principle of respect for persons, building and keeping trust of patients and the public, doing research that contributes to the goal of alleviating suffering and improving human health, and meeting the moral obligation that ensures the benefits of the research are available to all (Beskow 2016).
References:
Beskow L. M. (2016). Lessons from HeLa Cells: The Ethics and Policy of Biospecimens. Annual review of genomics and human genetics, 17, 395–417. https://doi.org/10.1146/annurev-genom-083115-022536
Shah, P., Thornton, I., Turrin, D., & Hipskind, J. E. (2022). Informed Consent. In StatPearls. StatPearls Publishing.
The Agenda with Steve Paikin. (2010, 6 May). Rebecca Skloot: The Story of HeLa. Youtube.com. https://www.youtube.com/watch?v=tnUp0xQlfK8
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