Courtesy Visiting Nurses Association of Greater Philadelphia
The Immortal Life of Henrietta Lacks by Rebecca Skloot:
Wow, what an awesome book at many levels! There were points in the story that I felt true interest, joy, sadness, anger, and understanding, not unlike what I expect Deborah and the Lacks family felt as they moved through the journey of dealing with their mother, wife, and/or relative Henrietta ‘s life, illness, death, and then eternal legacy. This story unfolds and is dichotomous. A young African American Woman dies of cervical cancer (caused by Human Papilloma Virus 18 “HPV-18” that is in current day preventable), and then her very own cells taken from her cancerous tumor contributes to science and research to save others and prevent /treat disease worldwide. Yet, while Henrietta’s “HeLa” cells continued to help science, her very own family suffered the fallout of her death including sexual, emotional, and physical abuse growing up without their mother, and a life full of poverty, discrimination, and social injustice.
As for the medical system during the timeframe of Henrietta and her family’s journey, it appeared broken and segregated at many levels in which informed consent and self-determination was not mandated or even considered. Elsie’s experience at Crownsville Hospital for the Negro Insane was eye-opening. Consider the fact that the Lacks family finds out for the first time that Henrietta’s cells are still alive and being used for science in 1973, when her name was revealed and linked to “HeLa cells” in print at least two years prior, and then portions of her medical records were published in 1985. This violates current Health Insurance Portability and Accountability Act (HIPAA) regulations that all health care related agencies are now mandated to follow.
In my opinion, Henrietta Lacks was an amazingly woman. Consider her journey throughout her short life, and experiences from the time she learned of her cervical cancer and the last eight months between her diagnosis and death. She was devoted to her children and family. She was used to hard work. She continued her normal routine for as long as possible. At the same time, people close to her indicated that they thought she knew what was facing her.
What is your impression of Henrietta and why?
Examine the social justice and equity issues that Henrietta and the Lacks family experienced when seeking and obtaining health care. Do you feel that the family should have received automatic health and financial benefits from the “HeLa” cell contribution to society? Explain your answer.
In current day, what information would physicians at Johns Hopkins have to provide to Henrietta related to use of a tissue sample of her cervix for use in research? Discuss whether or not you feel Henrietta would have provided consent for this purpose and why.
Distinguish how the current health care system would have differed in the care that Henrietta and her family received.