They are used for research on cloning, gene mapping and in vitro fertilization, as well as the effects of toxins, radiation, viruses, and carcinogens. Reader. The database subsequently was removed and the National Institutes of Health, who also planned to publish a similar paper, established a review board (that includes two of Henrietta’s family members) to determine who will gain access to this genetic information in the future (Zimmer 2013). This essay undertakes a retrospective ethical assessment of the Stateville malaria research during the 1940s in light of basic ethical principles and the Nuremberg Code, as well as contemporary malaria research. The Immortal life of Henrietta Lacks highlights how ethically flawed medicine once was and perhaps still is. Dr. Gey used part of Lacks’ name in the naming of the samples, without, again, her permission or that of her family. For Henrietta, there were more personal consequences related to the treatment that permitted her cells to be collected. Tissue culture is a fundamental part of modern medicine and responsible for many advances that we all take for granted. It was chosen as a best book of 2010 by more than sixty media outlets, including Entertainment Weekly , ⦠[*] In fact, its ethical issues suggested those raised in The Immortal Life of Henrietta Lacks, the tale of an African-American woman whose cells, collected without her permission in 1951, led to profound scientific discoveries. The Immortal Life of Henrietta Lacks or as scientists referred to her, HeLa, tells the story of a young black woman form a poor background who died of cervical cancer at the age of thirty one. Web. Skloot, Rebecca. About The Immortal Life of Henrietta Lacks The book is about Henrietta Lacks and the immortal cell line, known as HeLa, that came from Lacks's cervical cancer cells in 1951. This book also highlights the research discoveries and important ethical issues ignited by the HeLa cells. And yet this did not happen in Henrietta’s case. Mary Kubicek was an assistant who was sent to collect tissue samples during Henriettaâs autopsy in 1951. This African-American woman, who died in 1951, is the source of the famous HeLa cells. To think of all patients involved in research as people first. However, the multiple pedagogic impacts of this book on the public health classroom setting have yet to be comprehensively explored. These cell samples, taken while she was being treated for cervical cancer, have been developed and included in over 67 years of research. It's a basic requirement of ethical scientific research when human subjects are involved, something that we now take for granted thanks to things like the Nuremburg Code and the Helsinki Declaration. “Tuskegee syphilis experiment.” Wikipedia. Then, she noticed Henrietta’s painted toenails and realized that Henrietta was an actual person, not just a collection of cells. While this hopefully will provide Henrietta’s family with much needed closure on this topic, questions remain about how geneticists should handle such sensitive data for other patients. The book, The Immortal Life of Henrietta Lacks has won many awards and raises many questions. Abstract His idea was that, if he could draw blood from Henriettaâs descendants, he could isolate ⦠Henrietta Lacks, the Ethics of Consent is part two of a series. Further interactions with researchers did little to improve their understanding. This site uses Akismet to reduce spam. Your email address will not be published. This was standard practice in the 50s (for all races, not just blacks). Other family members, however, were angered by the profits made by biomedical companies while their family remained impoverished and could not afford health insurance (Skloot 168, 193). [‡] The terrible disparity between HeLa’s role in saving the lives of so many people—regardless of their racial background—and the unnecessary deaths of African-American people is more shocking when you consider that twelve of the Tuskegee study participant’s children still receive benefits (CDC 2017). What response did you have to Henrietta’s story? In 2013, the European Molecular Biology Laboratory published the genome of a line of HeLa cells to an online database that allowed public downloads of this data. âImmortal Life of Henrietta Lacksâ Tells a True Story of Science, Ethics and Family FRITZI BODENHEIMER: Rebecca Skloot is a science reporter. For Dr. Gey to have taken Henriettaâs cells without her consent was a large enough issue, but to use her cells and earn millions of dollars by creating medicine and new technology was even worse since her family had been living a difficult life. It was something she had not considered before. http://www.nature.com/news/hela-publication-brews-bioethical-storm-1.12689. What should you do, and how should you do it when using someone’s cells, in this instance, for research. Rebecca Skloot wrote this article for the New York Times Magazine four years before the publication of The Immortal Life of Henrietta Lacks.The article looks at several cases of doctors taking patients' tissues and using them in medical research without the patients' knowledge or consent. Day Lacks had prostate cancer and asbestos-filled lungs. Given how deeply this nonfictional account delves into medical ethics, politics, racism, and scientific discovery as they intertwine with the lives of Henrietta Lacks and her family, I will focus on the more poignant moments that exemplify these issues. It’s astonishing how many researchers (most but not all of whom were white) echoed this refrain and never thought about whether patients and/or their families might have concerns, even after ethical standards were changed. Change ), You are commenting using your Google account. Do the benefits that have come from working with HeLa cells outweigh Henrietta Lacksâs right to make decisions about her own body and medical treatment? And this is perhaps the most concerning theme that The Immortal Life of Henrietta Lacks reveals: thoughtlessness. ( Log Out / Why or why not? Miller FG. And although she would not have lived long enough to bear another child (Skloot 86), the choice should have been hers. The Immortal Life of Henrietta Lacks. Web. On November 14, David Lacks will speak at Whittenberger Auditorium. 2014: Nobel Prize awarded to Dr. Eric Betzig, Dr. Stefan W. Hell, and Dr. William E. Moerner for their advances in the Live Viewing of Cellular Growth. Over time, commentators have shifted from viewing the malaria research at Stateville as a model of ethical clinical research to seeing the experiments as paradigmatic of abusive human experimentation. The New York Times, 07 Aug. 2013. Or things like the Tuskegee syphilis experiment. Unaccustomed to dealing with dead bodies, she focused her gaze away from Henriettaâs eyes. Salam Badri 2/15/19 ISS 210 SECTION 004 Ethics Reflection on The Immortal Life of Henrietta Lacks Question List: 1. Henrietta harvests cancer, and it seems like it is no big deal for her. But where are the lines? Because of the questionable ethics behind the use of her cells, Henrietta Lacks has not just been dubbed the “Mother of Modern Medicine”. by Rev. Cultures had gotten contaminated and scientists wanted family blood samples so that they could separate Lacks’ cells from others. The Stateville penitentiary malaria experiments: a case study in retrospective ethical assessment. [‡] This study’s notoriety primarily stems from (but is not limited to) the fact that researchers purposefully withheld treatment from patients afflicted with syphilis long after a cure was developed in 1947. Henrietta Lacks, the Ethics of Consent is part two of a series. Towards the beginning of the book, the author provides information about the lack of medical care for African-Americans. The importance of Henrietta’s cells (called HeLa) to scientific research is vast. Henrietta Lacks became immortal, as it were, due to her HeLa cells. That research saved innumerable lives over the last six and a half decades. She died in 1955 (Skloot 274–6). "The Immortal Life of Henrietta Lacks" tells a story about racism, painful life experience of a family and scientific ethics violation. During World War II, malaria research was conducted in prisons. 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