![]() ![]() Other prominent themes and frames of reference focused on the welfare of the vulnerable (18.4 percent major emphasis 36.0 percent minor emphasis), and donor compensation (19.2 percent major 52.8 percent minor). The informed consent theme dominated media discussion, with almost 39.2 percent of articles/transcripts featuring the theme as a major focus and 44.8 percent emphasizing the theme as a minor focus. These were informed consent, welfare of the vulnerable, compensation, scientific progress, control/access, accountability/oversight, privacy, public education, and advocacy. We scored each article for the emphasis and appearance of 9 ethics-related themes. We conducted a content analysis of a population of relevant English-language articles and transcripts (n = 125) produced by news organizations and publications in the U.S., Canada, Great Britain/Ireland, and Australia/New Zealand. ![]() To assess the impact of the book on discussion within the media and popular culture more generally, we systematically analyzed the ethics-related themes emphasized in reviews and articles about the book, and in interviews and profiles of Skloot. As an opportunity to engage broader audiences on these concerns, bioethicists have welcomed the commercial success of Rebecca Skloot’s 2010 bestselling book The Immortal Life of Henrietta Lacks. What her doctors did was perfectly legal back then and, contrary to the repeated implications of this book, didn't net them a single dime by way of remuneration.Īs for the pharmaceutical industry as a whole, the HeLa cells are a potential resource (although these days they're laboratory pests that are more likely to contaminate cell lines than be used by pharmaceutical researchers), but they aren't the medications themselves, so should they also agree to share profits with the seaweed farmers whose products may be used to make agar, a common biological culture medium? What about the companies that manufacture Petri dishes? Pipettes? And not much could be done if they couldn't keep the lights on, so should the local utility company get its share of the profits? Granted, it may feel like human cells are more immediate than any of these things, but personal feelings and emotional responses are a poor basis for making legal decisions.The global expansion of biobanks has led to a range of bioethical concerns related to consent, privacy, control, ownership, and disclosure. And while one might argue that she could consent to have her cancer excised without consenting to have her cells cultured, the law at the time didn't recognize this distinction. She was at Johns Hopkins for the purpose of having the cancerous growths removed. And while one might argue th …more Nothing was taken from her "illegally". Nullifidian Nothing was taken from her "illegally". To me, it had a slow start but it is absolutely worth reading to the end. So, all that is the long way of saying: Yes. And I think this one of the main points, in addition to recognizing Henrietta Lacks: to highlight the arrogance and selfishness of those who thought it was fine to use/sell her cells in the name of benefiting humanity, without ever making a good faith effort to help Henrietta's family. Not only did Henrietta suffer, but generations of her family have suffered. By the end, you desperately want for the family to receive justice, compensation, recognition. The ethical dilemmas that unfold are what I found most compelling. But as the story progresses, she gets to know the family, and this is where it draws you in. I think maybe that's why it may initially feel imbalanced – because at first, all Skloot has is her research and science. But due to the circumstances, that information isn't available. It would have been incredible to find Henrietta's accounts of what was on her mind, how she felt. You get glimpses of Henrietta herself through their memories. You get glimpses of Henrietta herself throu …more As you make your way through the book, you learn much more about Henrietta through the lens of her family. Emily As you make your way through the book, you learn much more about Henrietta through the lens of her family. ![]()
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