the immortal life of henrietta lacks morality and ethics
Amazon Associates: As an Amazon Associate I earn from qualifying purchases. Dr. Gey used part of Lacks’ name in the naming of the samples, without, again, her permission or that of her family. Learn how your comment data is processed. Skloot, Rebecca. 2008 : Nobel Prize for Research awarded to Harald zur Hausen for linking viruses to the cause of different cancers. 26 Feb. 2017. http://www.nytimes.com/2013/08/08/science/after-decades-of-research-henrietta-lacks-family-is-asked-for-consent.html. These cell samples, taken while she was being treated for cervical cancer, have been developed and included in over 67 years of research. As a striking contrast to the immeasurable good made possible through research on HeLa cells, The Immortal Life of Henrietta Lacks offers a poignant depiction of the deep injustices she and her family experienced. ... were firmly enshrined in medical ethics even back in the 1950âs. Centers for Disease Control and Prevention. This African-American woman, who died in 1951, is the source of the famous HeLa cells. The Lacks family is, however, proud of how Henrietta contributed to science and now give talks about her (see rebeccaskloot.com for more information on how they’re fairing). The study, which neither benefited its patients (quite the opposite) nor obtained their consent, was not unique to Sweden. However, the multiple pedagogic impacts of this book on the public health classroom setting have yet to be comprehensively explored. Before she passed on, scientists had taken some of the tumor cells and these cells have been used in the medical field in different ways and by the useâ¦. can impact student pre-conceived beliefs around health care, medical ethics, and the social determinants of health (Figure 1). And yet this did not happen in Henrietta’s case. And although she would not have lived long enough to bear another child (Skloot 86), the choice should have been hers. The fascinating story of this important woman was revealed in Rebecca Sklootâs The Immortal Life of Henrietta Lacks (2010). 25 Feb. 2017. http://www.atlasobscura.com/articles/an-adorable-swedish-tradition-has-its-roots-in-human-experimentation. The Researcher’s Gateway Resource Library, Science and Technology at The Researcher’s Gateway, Authors, Poets, and Playwrights: a new Series, Research Posts for The Resarcher’s Gateway, https://researchersgateway.com/who-we-are/, Claudette Colvin – Sitting down for freedom. Wikimedia Foundation, 20 Feb. 2017. As it happens, lördagsgodis’s roots can be traced to experiments performed on mentally ill patients during the mid- to late 1940s that established sugar’s role in cavity formation. Abstract So, it is important not to see the issue as using tissue samples for research as bad, but rather collecting and using the samples in ethical ways that respects the rights of the source person. “A Family Consents to a Medical Gift, 62 Years Later.” The New York Times. Eventually, the Lacks family was given some control over how the cultures are used. 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. 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. Sparks, Joel. We don’t know the answer, but here are some things to consider and maybe discuss with your friends, family, students. Medical ethics is one of the central themes of The Immortal Life of Henrietta Lacks. National Institutes of Health, U.S. Department of Health and Human Services, n.d. Cultures had gotten contaminated and scientists wanted family blood samples so that they could separate Lacks’ cells from others. Henrietta Lacks, the Ethics of Consent is part two of a series. One son had a bad heart; Deborah had arthritis, osteoporosis, nerve deafness, anxiety, and depression. Timeline of Laws Related to the Protection of Human Subjects. Web. 2009: Nobel Prize for their Research awarded to Dr. Elizabeth Blackburn, Dr. Carol Greider, and Dr. Jack Szostak for their work with the compound structure at the end of a chromosome, called telomeres. Lacks wasn’t asked for consent; her family didn’t know what had happened with her cells. That research saved innumerable lives over the last six and a half decades. What happened to Henrietta Lacks, specifically taking her cancer cells without her knowledge or consent, was both the norm however unpalatable we might find it. 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. Salam Badri 2/15/19 ISS 210 SECTION 004 Ethics Reflection on The Immortal Life of Henrietta Lacks Question List: 1. Because of the questionable ethics behind the use of her cells, Henrietta Lacks has not just been dubbed the “Mother of Modern Medicine”. The first "immortal" human cells grown in culture, they are still alive today, though she has been dead for more than sixty years. This was standard practice in the 50s (for all races, not just blacks). These rules include do not cause pain, do not deprive of freedom, obey the law, and do your duty. She does that because â¦ 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. Lacksâs story, set in the 1940s and 1950s, puts a human face on a bioethical issue, an example of the same structural injustices still at work in our society all these years later. Web. Skloot, Rebecca. Skloot's debut book, The Immortal Life of Henrietta Lacks, took more than a decade to research and write, and instantly became a New York Times bestseller. “HeLa Publication Brews Bioethical Storm.” Nature (2013): n. pag. Web. Writer. âImmortal Life of Henrietta Lacksâ Tells a True Story of Science, Ethics and Family FRITZI BODENHEIMER: Rebecca Skloot is a science reporter. 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 Stateville penitentiary malaria experiments: a case study in retrospective ethical assessment. It hangs just inside one of the main entrances of the Smithsonian National Portrait Gallery in Washington, D.C. Three of her grandchildren were at the unveiling of the portrait of a woman they never knew. Henrietta Lacks: The Ethics of Immortality The most difficult aspect of scientific study isnât always the study of science itself, but making sure that the scientific research conducted and/or practiced is within the range of what is ethically and socially acceptable. 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. It would have made a huge difference to Henrietta’s family.”. Glasser, Hana. by Rev. “Tissue is so often dehumanised – it’s referred to in medical reports and documents, and no one ever seems to remember that for every single biological sample that’s used in any laboratory, anywhere, there’s a person.” Rebecca Skloot. In recent years, the case has attracted significant attention, with a book, The Immortal Life of Henrietta Lacks, published by Rebecca Skloot in 2010 and now an HBO feature film of the same title produced by and starring Oprah Winfrey as Lacksâs daughter. Johns Hopkins also never patented the cells. Johns Hopkins, the hospital where Henrietta was treated, standardly informed women of childbearing years that hysterectomy led to infertility—one of the rare instances where patients did receive adequate information from physicians in this book. Not long after Henrietta was identified as the HeLa “donor” in the early 1970s, the Lacks family discovered that her cells were still alive, a revelation they did not understand and found alarming (Skloot 173, 175–81). Day Lacks had prostate cancer and asbestos-filled lungs. It’s one of the positive results of the book. This book also highlights the research discoveries and important ethical issues ignited by the HeLa cells. During World War II, malaria research was conducted in prisons. But where are the lines? For Henrietta, there were more personal consequences related to the treatment that permitted her cells to be collected. Henrietta Lacksâs story was resurrected in magnificent detail in The Immortal Life of Henrietta Lacks, the 2010 best seller by freelance science author Rebecca Skloot. Thus, HeLa cells of Henrietta Lacks were considered the most significant contribution to â¦ Yet, still, they get no financial benefit, even though samples are being sold around the world. Callaway, Ewen. The key in genetic counseling is to help with informed decision making. Her name was Henrietta Lacks, but scientists know her as HeLa. N.p., 04 Jan. 2017. of privacy violation, particularly with regard to the story of Henrietta Lacks, certain moral rules may have been violated. [*] Elsie Lacks, Henrietta’s daughter, resided at a facility for mentally ill patients where medical experiments were carried out on the African-American patients living there, again without consent. Then, she noticed Henrietta’s painted toenails and realized that Henrietta was an actual person, not just a collection of cells. ( Log Out / 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? [*] 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. Sklootâs The Immortal Life of Henrietta Lacks tells the story of a 31-year-old African American woman who was treated for an aggressive form of cervical cancer in 1951 which she died of a year later. 26 Feb. 2017. http://www.nytimes.com/2013/03/24/opinion/sunday/the-immortal-life-of-henrietta-lacks-the-sequel.html?_r=0. She was a poor Southern tobacco farmer, yet her cells--taken without her knowledge--became one of the most important tools in medicine. The book, The Immortal Life of Henrietta Lacks has won many awards and raises many questions. Fill in your details below or click an icon to log in: You are commenting using your WordPress.com account. Your email address will not be published. Such patients, particularly impoverished, poorly educated African-American patients living in the pre—Civil Rights era in the United States were unlikely to ask questions: the presumption that physicians “knew best” coupled with widespread racism alone prevented such a thing (Skloot 63). Rebecca Skloot, who wrote “The Immortal Life of Henrietta Lacks” said: “If you spoke another language and you needed to see the doctor, you’d be provided with a translator – but if it’s the science you don’t understand, there’s no one there to translate for you, so you go away simply not knowing what’s been said. New York: Broadway Paperbacks, 2011. Today she is considered one of the most powerful symbols of informed consent. Sorry, your blog cannot share posts by email. http://www.nature.com/news/hela-publication-brews-bioethical-storm-1.12689. Web. Tissue culture is amazing and vital. The story of Henrietta Lacks was chronicled in the best-selling book The Immortal Life of Henrietta Lacks by Rebecca Skloot. “An Adorable Swedish Tradition Has Its Roots in Human Experimentation.” Atlas Obscura. Tissue culture is a fundamental part of modern medicine and responsible for many advances that we all take for granted. Ms. Scott has been an academic researcher and editor for over 22 years, working both in a University setting and as a very successful freelancer. It is standard for samples to be used for research–justified because used for the common good. 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. Public Reading: For the Love of Libraries, Reading Out Loud: Books, Kids, and Their Partners, twelve of the Tuskegee study participant’s children still receive benefits, http://www.nature.com/news/hela-publication-brews-bioethical-storm-1.12689, https://www.cdc.gov/tuskegee/timeline.htm, https://en.wikipedia.org/wiki/Tuskegee_syphilis_experiment, http://www.atlasobscura.com/articles/an-adorable-swedish-tradition-has-its-roots-in-human-experimentation, http://www.nytimes.com/2013/03/24/opinion/sunday/the-immortal-life-of-henrietta-lacks-the-sequel.html?_r=0, https://history.nih.gov/about/timelines_laws_human.html, http://www.nytimes.com/2013/08/08/science/after-decades-of-research-henrietta-lacks-family-is-asked-for-consent.html, View all posts by Rita E. Gould: anartfulsequenceofwords, Science Asides: Rachel Carson’s Silent Spring Still Speaks Its Truth. The non-fiction book called The Immortal Life of Henrietta Lacks reveals a story of Henrietta Lacks, an African American woman whose cancer cells were removed right after her death from cervix cancer.The book reveals contradictory issues related to medical ethics, science, and legal aspects. What drew my attention, however, was that title mentioned “human experimentation”. What should you do, and how should you do it when using someone’s cells, in this instance, for research. Yet this achievement also represents one of the most painful juxtapositions in The Immortal Life: the HeLa factory was located at The Tuskegee Institute, a place better known for its infamous syphilis study involving African-American men. How is it, then, that Mrs. Lacks’ family didn’t even know of this great ‘gift’ she gave to the world? She was a poor Southern tobacco farmer, yet her cells--taken without her knowledge--became one of the most important tools in medicine. 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. Centers for Disease Control and Prevention, 08 Dec. 2016. Post was not sent - check your email addresses! But Lacks’ family can’t even afford health care, and are not benefitting from the research. Skloot became interested in Lacks after a biology teacher referenced her, but didn't know much about her. As author Rebecca Skloot observes, patients of US public wards often were unaware that they served as research subjects, something some researchers considered to be an acceptable trade for receiving treatment (29–30). Born Loretta Pleasant (it is not clear how Henrietta became her first name), Henriettaâs mother, Eliza, born in 1886, died in childbirth in 1924. And this is perhaps the most concerning theme that The Immortal Life of Henrietta Lacks reveals: thoughtlessness. This site uses Akismet to reduce spam. 25 Feb. 2017. https://history.nih.gov/about/timelines_laws_human.html. “The Immortal Life of Henrietta Lacks, the Sequel.” The New York Times. The cells have been used for the polio vaccine and medications for Parkinson disease and leukemia. A Research Gateway for Writers, Researchers, Teachers, and Students. Also, sign up for the Sequence’s newsletter and keep current with the latest posts. Instead, I discovered something of an unpleasant (if unsurprising) postscript: the Lacks family again needed to protest the public distribution of information about Henrietta. The Immortal Life of Henrietta Lacks is a book that went against the topics discussed thus far by demonstrating the racial injustices within healthcare, the lack of patient autonomy, and the lack of informed consent provided to patients. The Immortal life of Henrietta Lacks highlights how ethically flawed medicine once was and perhaps still is. In The Immortal Life of Henrietta Lacks, Skloot says that "donating" or "contributing" tissues implies consent on the part of patient or family. Since Rebecca Sklootâs novel The Immortal Life of Henrietta Lacks spent 75 weeks on the New York Times best-seller list, Henrietta Lacks has become something of a household name. The Immortal Life of Henrietta Lacks. Today researchers are much more careful that samples are anonymous. Some of the Lacks family were upset over the use of the cells, and that they were being sold to researchers around the world without them getting any financial benefit or having any say in how they were used. Change ), You are commenting using your Google account. Henrietta Lacks became immortal, as it were, due to her HeLa cells. It was chosen as a best book of 2010 by more than sixty media outlets, including Entertainment Weekly , â¦ And this best represents what was most needed here, for researchers to think of Henrietta Lacks as a human with rights instead of as HeLa’s source. Henrietta Lacks, the Ethics of Consent is part two of a series. 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). For example, HeLa played a large role in proving that Salk’s polio vaccine worked—and it was African-American scientists and technicians who produced the massive quantities of HeLa cells needed to do so (Skloot 93–7). All of these things became public over the years with the lack of anonymity. In Rebecca Skloot's book, "The Immortal Life of Henrietta Lacks", Rebecca presents the life â¦ ( Log Out / Because of Lacks, this issue has become a current debate–personal consent vs. common good. And more medical information was revealed about Henrietta without consulting the Lacks family. Multiple Nobel Prizes have been awarded to people working with HeLa cells: On 14 May 2018 Lacks was honored by the hanging of her portrait, painted by Kadir Nelson. "The Immortal Life of Henrietta Lacks" tells a story about racism, painful life experience of a family and scientific ethics violation. It’s why so many rules and regulations exist now. Her records revealed that she would have refused treatment had she known (Skloot 47–8). As researchers, and people who have lost too many to cancer and other diseases, the more research done, the happier we are here at The Researcher’s Gateway. Change ). To learn about her life, check out our blog The Life of Henrietta Lacks. 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). [†] HeLa also played a role in the formation of these boards. Unaccustomed to dealing with dead bodies, she focused her gaze away from Henriettaâs eyes. It was something she had not considered before. 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. When researchers obtained blood samples from Henrietta’s family to establish genetic markers for HeLa, the Lacks family thought they were being tested for cancer (Skloot 180–4). Reader. The tissue sample collected from this hysterectomy, however, continued to grow long past its expected life: the discovery of an immortal line of human cells had been found (Skloot 40–1). And is that how things should be, when those cells are to this day being sold for research? Most people have never heard of Henrietta Lacks. In The Immortal Life of Henrietta Lacks, ethics violations are seen in later inteA Hopkins geneticist named Victor McKusick, whoâd been one of the authors to first publish Henriettaâs real name, had volunteered to take the lead on addressing the contamination issue that was then upending cell science. Rebecca Skoot's book The Immortal Life of Henrietta Lacks discusses the ethical issues surrounding the use of HeLa cells. The Question and Answer section for The Immortal Life of Henrietta Lacks is a great resource to â¦ ) to scientific research is vast Obscura article discussing lördagsgodis, the resulting study published Henrietta ’ s surprising many. ( Log out / Change ), you are commenting using your Twitter account blood samples so they... Involved in research as people first refused treatment had she known ( Skloot )! 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