Even still, asking questions continues to be critical to advocate for equal access to quality medical care for all people, to participate in difficult discussions about end of life care or treatment options, and to hold institutions and systems accountable to the people they serve. Today, in part because of stories like Henrietta Lacks’s, patients have greater expectation of full disclosure from doctors and human subjects in medical research have rigorous protections that didn’t exist in the 1950’s. This was 1951 in Baltimore, segregation was law, and it was understood that black people didn’t question white people’s professional judgment.” Even decades after her death, Henrietta’s family continued to give blood to Johns Hopkins researchers without full knowledge of what it was being used for. Especially black patients in public wards. This was a time when ‘benevolent deception’ was a common practice…doctors knew best, and most patients didn’t question that. In recounting Henrietta’s fatal illness and medical care at John Hopkins Hospital, Skloot notes,” there’s no indication that Henrietta questioned him like most patients in the 1950’s, she deferred to anything her doctors said. While Deborah Lacks and Rebecca Skloot were empowered to ask questions and able to insist on answers, it seems clear that Henrietta herself, was not. Indeed, the Henrietta Lacks story underscores the critical importance of question-formulation as a source of agency, a mechanism for holding institutions accountable, and a pathway for participating more effectively in decisions that affect you, your family, and your own medical care. Through the Question Formulation Technique (QFT), students immediately zeroed in on the racial and economic forces at work in the Henrietta Lacks story and some of the most complex issues in bioethics and medical research fields today. Was her story forgotten/ignored because she was black? What would have happened if doctors didn’t take her cells? Why is it significant that she was a black woman?ĭo you think she’d be happy with what was done with her cells?ĭid they have permission to extract cells? After reading the first four pages of the book and studying the image of Henrietta from the front cover, students wanted to know: More than 7 years after the publication of the book and 65 years after Henrietta Lacks lived, 9 th Graders in Ellen Gammel’s honors English class in Fitchburg, MA were burning with some of the same questions. Throughout the narrative, Deborah “ma lists of questions” for Skloot, and at one point “bombard” a doctor and researcher at Johns Hopkins “with questions: what made her mother sick? How was part of her still living? What did that mean? What did Henrietta do for science?” She eventually partnered with the Lacks family and in particular, Henrietta’s youngest daughter Deborah Lacks, who had pressing questions of her own. How was it that no one knew anything about the woman they had been taken from? Henrietta’s cells, known as HeLa cells to scientists worldwide, quickly became, and remain to this day, ubiquitous in medical research, contributing to significant medical breakthroughs including the polio vaccine, chemotherapy, cloning, and in vitro fertilization. “I wish I could tell you,” the professor responded, “but no one knows anything about her.” For writer and journalist Rebecca Skloot, it was a question she asked as a high school student in a college biology lecture that launched her into a decades long research and writing process that eventually became the New York Times Bestseller, The Immortal Life of Henrietta Lacks.Īfter a professor casually mentioned that the first immortal human cell line originated from a sample of cervical cancer cells collected, without her knowledge or consent, from a black woman named Henrietta Lacks, Skloot peppered the professor with questions: “Where was she from? Did she know how important her cells were? Did she have any children?”
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