‘The Immortal Life of Henrietta Lacks’, by Rebecca Skloot (2010) tells a story of a poor African American woman whose cancer cells were extracted without her awareness or consent and used for medical research at a lab of the Johns Hopkins University hospital. These cancer cells, later known as HeLa cells would become a major breakthrough in the field of medical research. The story is told from the viewpoint of a reporter who was diligent and thorough in collecting large amounts of information via documents and through interviews of people who were involved in the case. This book sheds light on the morality and legal aspect of the obtainment and experimentation of a person’s cells. The underlying theme throughout this story was the issue of consent as this woman’s cells were extracted for experimental reasons without her awareness and consent. This violation of trust set the stage for many of the healthcare laws we have today regarding a patient’s consent and privacy (Deitz, 2017). Social determinants of health such as gender, race, and economic status played key roles in the story of Henrietta Lacks. Through her story, in relation to ethics, millions of lives were impacted in a positive way.
The author exposed decisions that were made by medical personnel throughout the case which were considered unethical (Dimaano & Spigner, 2017). One such decision was the failure to inform Henrietta of the possible medical risks accompanying her treatments. The act of ignoring Lacks’ expression and symptoms of pain and proceeding through these treatments without administering proper pain management measures, combined with the lack of ascertaining the patient’s consent were clear indicators of an unethical process. As Henrietta’s condition began to worsen and her cancer cells metastasized, a research project was underway that would lead to an enormous medical discovery. Even though this was for the advancement of medicine, and the benefit of the many, the process was conducted unethically (Dimaano & Spigner, 2017).
Throughout this case, there was never any mention by medical personnel to Henrietta and her family of their professional objective to extract and reproduce her cells which is a wrongful practice and quite unethical (Dimaano & Spigner, 2017). So the question can be raised as to why the medical scientists proceeded in this regard. This was a time when medical institutions did not place any emphasis on ward patients, especially since they did not pay for their treatment, and minority members were even more obstructed. These scientists acted in a way with the goal in mind of advancing medical research that they thought would be a positive research endeavor for the masses but went about it in a flawed and unethical manner.
Quite a few social determinants of health (Marmot, 2005) were key themes throughout this case. One such determinant was race. As Henrietta Lacks became ill and sought medical attention, she would be treated in a hospital that was racially segregated at that time. There was a section of the ward meant exclusively for black patients which Henrietta had to go according to the established hospital rule of that day. In this ward, it was reported that doctors and other medical personnel were not as diligent and treated patients in a more lackadaisical manner than the wards who treated white patients.
Medical research scientists and doctors treated Henrietta’s family in an unprofessional manner throughout the whole process. For instance, her family members were unaware that literally trillions of Henrietta’s cells were being sent around the world for medical treatment and research until about twenty years after she had died. The family was kept unaware, were fed lies, and were ignored with their questions and concerns. This inevitably led to a general feeling of mistrust when Rebecca Skloot initially attempted to communicate with the family to discuss Henrietta’s case for the book.
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Other social determinants of health (Marmot, 2005) in this case was that of economic status and education, or lack thereof. Henrietta Lacks was poor and lived in poverty her entire life. In a time of racial oppression, Henrietta worked tough jobs and found it extremely difficult to advance beyond a poverty status.
Both poverty and lack of education was a combination that kept people like Henrietta struggling throughout their lives. The lack of education was a derivative of being poor. During this time, it was common for the children of poor families to work in order to provide much needed money to support that family. By working, children would not be afforded the means or the time to go to school.
Poverty was also a contributing factor in the lack of good healthcare. When Henrietta started feeling ill, her life experience with racial inequality, poverty status, and lack of education, lessened her confidence so much that she felt that seeking medical treatment would not be beneficial. Therefore, her delay in treatment allowed her cancer cells to spread. To make matters worse, when she finally sought treatment, she was misdiagnosed quite possibly given the wrong treatment – as she would later be misdiagnosed twice. As a patient in the segregated public (non-paying), it could be assumed that she did not receive the same level of quality care and treatment as those in the white or paying ward.
In conclusion, Henrietta Lacks’ ‘HeLa’ cells (Skloot, 2010) were in fact a major advancement in medicine, attributed to saving lives and improving the quality of life for many. In this particular case, the practice of research with a patient’s cells, or any living tissue for that matter, without receiving consent from the patient or family, has led to new standards and laws today that protect the patient’s right to consent (informed consent) as well as their privacy such as the Health Insurance Portability and Accountability Act (HIPAA) (HHS, 2020). Also, because of Henrietta Lacks, patients today are required to be informed of any financial matters that are associated with the use of their tissue (Deitz, 2017).
The extraction of Henrietta’s cells for medical research outside of her consent tells the story of an absence of ethical standards. However, her famous story has provided us today with ethical standards in healthcare that are mandated and required, providing patients with an overall improved quality of healthcare.
References
- Deitz, Justine. (2017). Henrietta Lacks lives on. Health law and Policy Brief. Retrieved from: http://www.healthlawpolicy.org/henrietta-lacks-lives-on/.
- Dimaano, C., & Spigner, C. (2017). Teaching from The Immortal Life of Henrietta Lacks: Student perspectives on health disparities and medical ethics. Health Education Journal, 76(3), 259–270. https://doi.org/10.1177/0017896916667624
- Health and Human Services (HHS). (2020). Health Insurance Portability and Accountability (HIPAA). Retrieved from: https://www.hhs.gov/hipaa/index.html.
- Marmot, M. (2005). Social determinants of health inequalities. International Centre for Health and Society, University College London, 1–19 Torrington Place, London WC1E 6BT, UK. https://doi.org/10.1016/S0140-6736(05)71146-6
- Skloot, R. (2010). The Immortal Life of Henrietta Lacks. New York: Crown
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