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The Immortal Life of Henrietta Lacks details the experience of how Henrietta’s cells were taken by a physician without her information or consent, and subsequently underwent research and testing, the results of which has significantly advanced healthcare treatments around the world. Both legal and ethical considerations are discussed. After completion of the book, you will be required to submit a reflection paper addressing the following points: 1. 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 anesthetic either local or general that they may deem necessary in the proper surgical care and treatment of: [Henrietta Lacks.” Based on this statement, do you believe TeLinde and Gey 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 the medical research if she had been given all the information? How do you think that Henrietta’s race and/or educational level affected this issue, if at all? 2. 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. Further, think about john Moore and the patent that had been filed without his consent on his cells called “Mo.” How do you feel about the Supreme Court of California ruling that states when tissues are removed from your body, with or without your consent, any claim you might have had to owning them vanishes? 3. In your opinion, does (or should) what is needed in order to obtain informed consent change if someone is uneducated? To what extent do you think a healthcare provider should have to go in order to tailor the information given to the patient? 4. In many instances throughout the book, while there was not a law in place (at the time) to direct certain activities of the physicians and the researchers, there were codes of ethics, and in most cases, the physicians and researchers knew the effects of withholding certain information from patients and the ethical implications of their actions. Discuss some of these legal/ethical interplays that the book discusses. Does your feelings on some of these instances change depending on whether the individual is a treating physician or a researcher? Does the physician or researcher’s intent behind not disclosing, or in some cases, deliberately misrepresenting certain motives, change your judgment as to their actions?

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