Henrietta signed a consent form that said, “I hereby give consent to the staff of The Johns Hopkins Hospital to perform any operative procedures and under any anaesthetic either local or general that they may deem necessary in the proper surgical care and treatment of: ________” (page 31). Based on this statement, do you believe TeLinde and Gey (her physicians) had the right to obtain a sample from her cervix to use in their research? What information would they have had to give her for Henrietta to give informed consent? Do you think Henrietta would have given explicit consent to have a tissue sample used in medical research if she had been given all the information? Do you always thoroughly read consent forms before signing them?
Ethical Research Discussion Questions:
Part One
Discover the story of Henrietta Lacks by:
- Watch the following videos:
https://www.youtube.com/watch?v=4AuOWSOzdcA
https://www.youtube.com/watch?v=j0AkJXI2Yxk
http://rebeccaskloot.com/the-immortal-life/press/
- Reviewing the timeline provided on CANVAS-labeled Immortal Life of HL Timeline.pdf
- Visit the henriettalacksfoundation.org
Answer each question and explain your rationale
- Henrietta signed a consent form that said, “I hereby give consent to the staff of The Johns Hopkins Hospital to perform any operative procedures and under any anaesthetic either local or general that they may deem necessary in the proper surgical care and treatment of: ________” (page 31). Based on this statement, do you believe TeLinde and Gey (her physicians) had the right to obtain a sample from her cervix to use in their research? What information would they have had to give her for Henrietta to give informed consent? Do you think Henrietta would have given explicit consent to have a tissue sample used in medical research if she had been given all the information? Do you always thoroughly read consent forms before signing them?
- Henrietta’s daughter, Deborah shares her mother’s medical records with Skloot (the author of the book-“The Immortal Life of Henrietta Lacks”) , but is adamant that she not copy everything. On page 284 Deborah says, “Everybody in the world got her cells, only thing we got of our mother is just them records and her Bible.” Discuss the deeper meaning behind this sentence. Think not only of her words, but also of the physical reaction she was having to delving into her mother’s and sister’s medical histories. If you were in Deborah’s situation, how would you react to someone wanting to look into your mother’s medical records?
- Deborah says, “But I always have thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors? Don’t make no sense” (page 9). Should the family be financially compensated for the HeLa cells? If so, who do you believe that money should come from? Do you feel the Lackses deserve health insurance even though they can’t afford it? How would you respond if you were in their situation?
- In 1973 researcher Dr. McKusick directed Susan Hsu to contact Henrietta’s children for blood samples to further HeLa research; neither McKusick nor Hsu tried to get informed consent for this research. Discuss whether or not you feel this request was ethical.
- Describe the work of the Henrietta Lacks foundation.
Part Two:
Read about the Tuskegee Syphilis Study at https://www.cdc.gov/tuskegee/timeline.htm. Describe the study and your thoughts about informed consent and ethical principle of nonmaleficence with these human subjects.
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