Ethics of Human Research and Informed Consent in Immortal Life of Henrietta Lacks

Informed Consent is patient authorization which is given to a specialist for treatment with full knowledge of the potential dangers and advantages. In The Immortal Life of Henrietta Lacks, Rebecca Skloot addresses the treatment offered at Johns Hopkins in the 1950’s and Tuskegee. The Tuskegee syphilis study and uninformed consent became prevalent issues in the medical community which resulted in laws and regulations formulated to address these issues. These laws and regulations have been passed on for generations and will continue to do so because of the unethical disasters of uninformed consent which was caused by Johns Hopkins, the Tuskegee Syphilis study, and the accident involving Henrietta Lacks getting her immortal cells stolen from her. The Tuskegee syphilis study was one of the most important cases that determined the future for informed consent.

The Tuskegee syphilis case was a serious topic in the 1930’s. Poor, uneducated black men were being used for research when they thought they were getting treatment. There were medications for syphilis accessible when the investigation started, yet it was chosen to retain even those from members without their insight and graph the course of untreated syphilis in these African American men. The medication was penicillin, which was a known treatment for syphilis at the time, yet the men were supplied with placebos instead of medicine that would actually cure them because doctors wanted to continue their research without these men knowing. According to the Tuskegee Syphilis study by Donna Batten, “It (The Tuskegee Syphilis study) resulted in new laws requiring informed consent for medical experiments on humans” (Batten 1⁄3). The Tuskegee Syphilis study affected many lives because the doctors were so focused on medical research rather than saving lives. The guidelines that were made were under the direction of the National Commision for the Protection of Human Subjects of Biomedical and Behavioral research. They were “… in charge of identifying the basic ethical principles that should underlie the conduct of biomedical and research involving human subjects and to develop guidelines that should be followed to assure that such research is conducted in accordance with those principles” (Mandal. Et all 2/4). These guidelines were created against these unethical practices because the study resulted in many men being permanently affected or even dying because the doctors used them as a research project rather than increasing their chances of getting well. Another example of how informed consent was forever changed in relation to Johns Hopkins Hospital.

Johns Hopkins is known for the many medical advances and achievements they have made in research over the years. Johns Hopkins is trusted by many, yet some people believe Johns Hopkins has wronged them by using uninformed consent for research. The doctors and people who work at Johns Hopkins claim they have done nothing wrong, that they were just fueling research for the good of science; their website makes them seem credible and trustworthy. According to Johns Hopkins website,’The current oversight system, requiring informed consent for most clinical research, grew out of a scandal-ridden period in which people were used in research and exposed to significant risk without their knowledge or consent…'(Johns Hopkins University/Hub 2014). They claim that since there was no regulation on cell research and informed consent in the 1950’s, that they did nothing wrong. And yes, it is true that there was no regulation on cell research but in the 1980’s, new laws and regulations called common rule was created; it went as follows: “requirements for ensuring compliance by research institutions and requirements for researchers obtaining and documenting informed consent” (Mandal. Et all 3⁄4).This relates back to informed consent because Johns Hopkins did not get consent for the many research projects they have conducted, especially when it comes to African-American’s. Many indignious, poor, African Americans believed the tales and stories of Johns Hopkins kidnapping blacks and using them as test subjects. Many say these tales are true. This was a fear commonly spread throughout the surrounding cities because of the past Johns Hopkins has had in which they have ignored informed consent for research purposes. Johns Hopkins also plays a major role in the case of Henrietta Lacks.

The Immortal Life of Henrietta Lacks portrays the genuine story of Henrietta Lacks and what she faced as she was the minority and she had special cells. Rebecca Skloot not only mentions the challenges Henrietta faced, but how Johns Hopkins and Tuskegee played a role in them as well. She touches on the subject this in Chapter six, when Skloot references the oral presentation she gave in her history class. She addresses uninformed consent, the fact that they were all poor uneducated black men, and that doctors and nurses watched them die slow, painful deaths (Skloot 50). This is not the only instance Skloot alludes to the topic of uninformed consent; she mostly talks about it in regards to Johns Hopkins, and Henrietta‘s case. Henrietta lacks had her cell tissue stolen from her and John’s Hopkins hospital from her cancer biopsy. She was completely unaware of the immortal cell chain her body contained and had no idea the doctors were researching her and testing her cells constantly. They grew so much that her cells were named HeLa and even sold around the world. In the prologue, Skloot is interviewing Deborah, when Deborah says “All I remember is that she had this disease, and right after she died they called me in the office wanting to get permission to take a sample of some kind. I decided not to let them” (Skloot 4). This relates back to informed consent because the doctors not only did not get consent from Henrietta or her family, but they turned around and used her cells for their own benefit and profit.

Tuskegee, Johns Hopkins, and The Immortal Life of Henrietta Lacks have many things in common, but the main topic is uninformed consent. Tuskegee has the syphilis case in which doctors did research on African American men who had syphilis and did nothing to help them, and Johns Hopkins has taken cells for research on many occasions, and The Immortal Life of Henrietta Lacks because Henrietta’s cells were taken from Henrietta with no consent and built into a business that makes money off buying and selling HeLa. Even though we may have never had the amazing advancements that we have today in medicine because of HeLa, the doctors simply did not ask. In The Immortal Life of Henrietta Lacks, Rebecca Skloot address is the treatment offered at Johns Hopkins in Tuskegee. The Syphilis study and uninformed consent became prevalent issues in the medical community which resulted in laws and regulations formulated to address these issues.

Works Cited

1. Batten, D. (n.d.). Tuskegee Syphilis Study. In American Decades: 1930-1939. Gale. Retrieved from Gale In Context: High School database.
2. Johns Hopkins University/Hub. (2014). History of Informed Consent. Johns Hopkins Medicine. Retrieved from https://www.hopkinsmedicine.org/institutional_review_board/about/faq/history_informed_consent.html
3. Mandal, J., Parija, S. C., & Mandal, J. (2012). Ethical guidelines for biomedical research on human subjects: A review. Perspectives in Clinical Research, 3(2), 38–44.
4. Skloot, R. (2010). The Immortal Life of Henrietta Lacks. Broadway Books.
5. Skloot, R. (2010). The Immortal Life of Henrietta Lacks (Prologue). Broadway Books.
6. Skloot, R. (2010). The Immortal Life of Henrietta Lacks (Chapter 6). Broadway Books.
7. Syphilis Study at Tuskegee. (2022). National Center for Bioethics in Research and Health Care, Tuskegee University. Retrieved from https://www.tuskegee.edu/about-us/centers-of-excellence/bioethics-center/about-the-usphs-syphilis-study
8. U.S. Department of Health and Human Services. (1979). Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Retrieved from https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/index.html
9. U.S. Department of Health and Human Services. (2009). Code of Federal Regulations. Title 45: Public Welfare, Part 46: Protection of Human Subjects.
10. U.S. National Library of Medicine. (2022). Henrietta Lacks and the HeLa Cells.