Henrietta Lack

Henrietta Lacks, a young black woman suffering from cervical cancer, has and continues to contribute greatly to the advancement of science unbeknownst to her and her family. This young woman has played a crucial role in developing the polio vaccine, cloning, gene mapping and in vitro fertilization (Zielinski, 2010). “Protecting human dignity and preventing exploitation are core concepts in both bioethics and human rights” (Marouf & Esplin, 2015). These core concepts were not upheld in 1951 when a Johns Hopkins scientist took a tissue sample from a young woman dying from cervical cancer (Zielinski, 2010). This scientist violated two major concepts in this particular case: informed consent and privacy and autonomy.

Prior to 1966, “clinical

research with patient-subjects was routinely conducted without informed consent for research participation” (Miller, 2014, p.142). It took 20 years for researchers to recognize the importance of the Nuremberg Code of 1947 due the Surgeon General William Steward mandating federally funded research to uphold these standards, which “stressed the need for informed consent…risk benefit assessment, and protection of the rights and well-being of research subjects” (Miller, 2014, p. 143). This code had great implications on the future of research for researchers could no longer partake in human experimentation without the consent of the patient or the patient’s family, which would include a complete disclosure of risks and benefits. “The focus should not be exclusively on the giving of consent by the research subject. It also should be on the asking for consent by the researcher… many believe they ought to be consulted and asked for permission before their specimens and data are collected, analyzed, stored and used for research” (Rothstein, 2015, p. 427).
These very important acts did not take place in the case of Henrietta Lacks. Instead, the researcher simply took the cells and did not tell anyone. It is important to note, researchers continued to perform studies on Ms. Lacks’ cells for many years without ever getting informed consent from the family even after the mandating of the Nuremberg Code of 1947 in 1966. I believe this act was the biggest violation of patient rights.
The second violation in this case, was the lack of privacy and autonomy.

At the time of the initial research in 1951, researchers named the cells HeLa Cells in order to protect the identity of Ms. Lacks. However, according to Zielinski (2010), in 1970, Ms. Lacks’ name was leaked into the public. Today, one of the “most promising aspects of health information technology in both the clinical and research settings is the ability to provide greater privacy protection” (Rothstein, 2015, p. 426). The two core concepts previously mentioned, protecting human dignity and preventing exploitation, were actually developed in response to other acts of exploitation such as the Tuskegee Syphilis Study (Marouf & Esplin, 2015). In this case, I do not believe Ms. Lacks’ name was originally exploited, but as time passed and technology improved, her name was ultimately learned. Even technology today is not fail-proof and names have been leaked into the public despite all efforts to protect them, so I would not deem this an intentional

breech.
Both informed consent and privacy and autonomy are rights that should never be denied to a patient nor a patient’s family. “Ethical practice does not allow a professional to violate the rights of a patient” (Joel, 2013). This breech in patient rights leads to an overall distrust in the system, which is evident by the family’s desire to seek financial settlement. I believe this family has a very significant case due to the continued research performed on the tissue long after implementation of the Nuremberg Code.
Cancer is a very delicate and sensitive topic and therefore can create mixed emotions in not only the patients but the families involved.

My daughter is a cancer survivor to a very rare form of cancer. Consequently, researchers wanted the tumor after her surgery and wanted to continue to keep an eye on my daughter for years to come. This study is an extensive one and I am proud that my daughter, at the age of 8, was completely informed, as was I, of the intent of the research. None of her rights were violated in the process of this research. As a mother and a nurse, I do not want any other child to experience what my child went through, so this was an easy decision for me to make. However, I am glad I know where the tissue has gone. I would have a difficult time if I learned years later that they used the tissue for cloning, gene mapping, etc. I feel I, as the mother, have a right to know exactly the intent of the tissue. However, I would have a hard time accepting monetary reward knowing it is going towards advancement and

good.
Joel, L. A. (2013). Advanced practice nursing: Essentials for role development (3rd ed.). Philadelphia, PA: F. A. Davis
Marouf, F. E., & Esplin, B. S. (2015). Setting a Minimum Standard of Care in Clinical Trials: Human Rights and Bioethics as Complementary Frameworks. Health & Human Rights: An International Journal, 17(1), 31-42.
Miller, F. G. (2014). Clinical research before informed consent. Kennedy Institute of Ethics Journal, 24(2), 141-157.
Rothstein, M. A. (2015). Ethical Issues in Big Data Health Research: Currents in Contemporary Bioethics. Journal of Law, Medicine & Ethics, 43(2), 425-429. Doi: 10.111/jlme.12258
Zielinski, S. (2010). Cracking the Code of the Human Genoma Henrietta Lacks’ ‘Immortal’ Cells. Retrieved from http://www.smithsonianmag.com/science-nature/henrietta-lacks-immortal-cells.html