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Willowbrook School Hepatitis Study

Critical knowledge about hepatitis A and B was gained through the Willowbrook study, bringing significant benefits to society as a whole. At the same time, the research is seen as unethical, particularly due to the purposeful infection of the vulnerable children in the study and the questionable informed consent process. Respond to one of the two prompts:

First, reflect on how personally you have benefited from the research done at Willowbrook. How can we, as a society, strike a balance between advancing medical knowledge and protecting the rights and well-being of research participants, particularly vulnerable populations? If you were a nurse at a hospital that performs research, what steps would you take if you believed patient safety was at risk in a research study? Note at least one ethical principle from the Belmont Report in your answer.
OR
First, reflect on how personally you have benefited from the research done at Willowbrook. Because Willowbrook’s general wards were full, the only way children could be admitted to the School was for parents to consent for their children to be enrolled in the study. Using at least 1 ethical principle from the Belmont Report, discuss the requirements of informed consent and what researchers could have done to protect the children’s rights.

Henrietta Lacks’ Immortal Cells

The story of Henrietta Lacks and her cell line was not widely known until a book was published in 2010 (and Oprah Winfrey turned it into a movie). Although Mrs. Lacks received the standard of care for her cancer treatment, she was never informed that her cells (HeLa) showed unusual behavior or had such potential in scientific research. This raises questions about the rights of individuals over their biological materials. Respond to one of the two prompts:

First, reflect on how personally you have benefited from the HeLa cell line. How can we ensure that Henrietta Lacks’ story serves as a catalyst for change? What suggestions do you have for addressing the situation now? If you were a nurse in a hospital that performs research, how would you ensure that your patients have agency and control over their participation in healthcare research?  Note at least one ethical principle from the Belmont Report in your answer.
OR
First, reflect on how personally you have benefited from the HeLa cell line. Using the three ethical principles from the Belmont Report, explain what researchers could have done differently when Mrs. Lacks was in Johns Hopkins for care to ensure full informed consent and that her rights were protected. How would this have changed her story and her family’s story?