History of the Text
Publication History and Reception:Rebecca Skloot spent over ten years researching and writing The Immortal Life of Henrietta Lacks, and the book saw immediate success upon its publication. Henrietta Lacks stayed on the New York Times best-seller list for over seventy-five weeks after it was published, earning the Heartland Prize for Nonfiction and the Wellcome Trust Book Prize in 2010, and it was recognized by over sixty media outlets as a book of the year in 2010. It was adapted into a film in 2017, and Oprah Winfrey starred as Deborah Lacks. Skloot used some of the earnings from the book to start the Henrietta Lacks Foundation, a non-profit whose mission is to provide financial aid to the families who have been affected by the consequences of unethical biomedical research, such as the descendants of Henrietta Lacks and participants of the Tuskegee Syphilis Studies. The book continues to promote discourse on the impacts and ethics of scientific research using human tissue samples. As of 2017, the foundation had awarded over 50 grants to members of the Lacks family.
Examining Ethics of Biomedical Research: Skloot wrote The Immortal Life of Henrietta Lacks in the first decade of the twenty-first century, a decade that saw radical changes in biomedical ethics. The scale of tissue research increased dramatically, with the National Institute of Health investing over $13.5 million in developing a bank for samples taken from newborns in the US. Private companies such as 23andMe inspired millions to send in personal tissue samples in order to discover their personal genetic information. Government regulation and ethical standards regarding the consent and commercialization of tissue samples were—and in many cases remain—murky. Only studies that received federal funding and the personal donor information of tissue samples were held to government standards for informed consent. Meanwhile, the healthcare crisis in the United States garnered increasing attention. The quality of care and access for many Americans decreased while corporate and pharmaceutical profits skyrocketed. The landscape of medicine received greater publicity as President Obama pushed to make the Affordable Care Act a signature policy of his first term in office.
- The Lacks Family Humanizes Social Issues: Henrietta and her children put a human face on many of the social dynamics at play in the text. Henrietta’s experience exemplifies the injustices that occur in matters of patient consent and privacy. Henrietta’s experience in a segregated ward—and her children’s inability to access education and healthcare—illustrate the institutionalized racism that affects minority communities. The difficulties that Deborah and Sonny Lacks face as they struggle to attain their own healthcare reveal the broader flaws in the American healthcare system.
- Making Scientific Nonfiction Accessible: The Immortal Life of Henrietta Lacks is a complex, layered text. The book at once narrates the life and times of the Lacks family, describes the enormous benefits of scientific and medical research, and considers the racial bias and harm in research practices. In writing Henrietta Lacks, Skloot faced the challenge of presenting this dense material to a wide, non-specialist audience. Skloot’s solution was to weave in her own narrative describing her struggle to report the story at hand. Skloot’s tumultuous relationship with Deborah Lacks—and their respective responses to the tragedies they uncover in their research—form the dramatic lens through which readers understand the story.
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