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BMC Medical Ethics Study Evaluates the Media Impact of Rebecca Skloot's Immortal Life of Henrietta Lacks
In a new study at the journal BMC Medical Ethics, my colleague Declan Fahy and I analyze the journalistic and critical reception of Rebecca Skloot's 2010 best-selling book The Immortal Life of Henrietta Lacks, focusing on the implications for public understanding and engagement on issues related to tissue donation, research and biobanking.
The global expansion of biobanks has led to a range of bioethical concerns related to consent, privacy, control, ownership, and disclosure. As an opportunity to engage broader audiences on these concerns, bioethicists have welcomed the commercial success of Skloot's critically-acclaimed book.
Most biobanks today collect finite amounts of tissue, very few of which are made into “immortal” cell lines as was the case with the HeLa cells documented in Skloot's book. In addition, many biobanks do not use tissues removed during medical procedures, as was the case with Henrietta Lacks. Yet the story presented by Skloot had the potential to generate a broader discussion in the media and among the public about the ethical concerns related to biobanks and tissue research, a discussion that Skloot admirably attempted to generate in media interviews, in the afterward to her book, and in prominent freelance articles.
Best-selling authors and journalistic commentators like Skloot “provide not only the facts but also the formats, norms, and rhetorics that citizens employ to develop their opinions and enter wider discussion,” conclude sociologists Ronald Jacobs and Eleanor Townsley in their recent book The Space of Opinion: Media Intellectuals and the Public Sphere. “Studying who these communicators are and what cultural practices they use in their debates is just as important as identifying the range of relevant facts that news media do or do not provide.” Similarly, several decades of research in communication and related social science fields has emphasized the unique influence that journalists can have in framing the relevance of complex, science-related subjects and in shaping public judgments and decisions about why an issue might be a problem, who or what is responsible and what should be done.
Given the importance of the media to how the broader public understands the nature of bioethics and biobanks specifically, along with the special role that best-selling science authors and communicators like Skloot can play in reaching wider audiences and stimulating media debate, the purpose of our study was to systematically evaluate the ethical themes emphasized in reviews, profiles, commentaries, stories and features specific to Skloot's book.
Below is the abstract to the study summarizing our methods and findings and an early version is available open-access online. Following the abstract is the discussion and conclusion to the study.
On Twitter, Skloot has already started a welcome discussion of the study, the nature of media coverage and the broader impact for the book. As we do in the study, Skloot notes that besides media coverage, many classroom, campus and other public forum discussions of the book have taken place, and these discussions are also important to analyze and evaluate in future research. Moreover, as she notes and we emphasize in the study, journalists and reviewers often missed the chance to offer a broader look at the range of issues involved in tissue research, donation and biobanks more generally.
Nisbet, M., & Fahy, D. (2013). Bioethics in popular science: evaluating the media impact of The Immortal Life of Henrietta Lacks on the biobank debate. BMC Medical Ethics, 14 (1) DOI: 10.1186/1472-6939-14-10
The global expansion of biobanks has led to a range of bioethical concerns related to consent, privacy, control, ownership, and disclosure. 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. 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.
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. We scored each article for the emphasis and appearance of 9 ethics-related themes. These were informed consent, welfare of the vulnerable, compensation, scientific progress, control/access, accountability/oversight, privacy, public education, and advocacy.
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. 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). Ethical themes that comprised a second tier of prominence included those of scientific progress, control/access, and accountability/oversight. The least prominent themes were privacy, public education, and advocacy.
The book has been praised as an opportunity to elevate public discussion of bioethics, but such claims should be re-considered. The relatively narrow focus on informed consent in the media discussion generated by Skloot's book may limit the ability of ethicists and advocates to elevate attention to donor control, compensation, patenting, privacy, and other ethical issues. Still, ethicists should view the book and a pending major TV film translation as opportunities to highlight through media outreach, consultation exercises and public forums a broader range of bioethical concerns that would otherwise be under-emphasized in news coverage. Such efforts, however, need to be carefully planned and evaluated.
BMC Medical Ethics is an open access, peer-reviewed journal that considers articles in relation to the ethical aspects of biomedical research and clinical practice, including professional choices and conduct, medical technologies, healthcare systems and health policies. The study is part of a special series of papers that relate to the University of Alberta's Health Law and Policy Science Group organized workshop on "Using and Abusing Evidence in Science and Health Policy," held June 2012 in Banff, Alberta. Other studies to date appear at BMC Medical Ethics, BMC Public Health, and BMC Medicine. The series editor is Timothy Caulfield, Canada Research Chair in Health Law and Policy at the University of Alberta.
FROM THE CONCLUSION TO THE STUDY:
Our analysis indicates that media reviews, profiles, and stories reflected the major ethical themes emphasized by Skloot in her book and publicity efforts. These included an overwhelming focus on issues related to informed consent, the welfare of the vulnerable, the treatment of individuals as people rather than mere subjects, and considerations of compensation and profit sharing. Less frequently emphasized themes included discussion of the conditions under which the need for scientific progress should outweigh other ethical concerns, the control that donors might have over their specimens, the balance between patenting and access to research, and accountability or oversight relative to current policies and procedures. Rarely mentioned or emphasized were considerations related to donor privacy and access to research results, to public education, or to the role of advocacy and activism.
Relative to understanding the direct impact of Skloot’s book on public judgments, our findings should be interpreted cautiously. Our study identified the range of arguments and themes that were most readily available via the media for the public to draw upon in forming opinions and making decisions. These findings, however, should be paired with direct audience research employing surveys, focus groups, in depth interviews and other methods. In coding the results of open-ended surveys, however, the typology of themes that we developed can be usefully applied. The coding scheme can also be used in future research related to media coverage and policy discourse specific to biobanks, including the type of discourse that takes place at public meetings and events. Given the nature of our study, it is also not possible to say with confidence if Skloot’s book was the principal driver of the focus on informed consent in reviews, profiles, news stories, and opinion articles.
Journalists and reviewers are not only influenced by the content of the book (and related publicity materials), but also by broader cultural and political discourses about biomedical research. Yet regardless of the factors ultimately responsible for the strong emphasis on informed consent, the narrow focus may in fact limit the ability of ethicists and advocates to elevate attention to donor control, compensation, patenting, privacy, and other ethical issues. In this regard, even though some scientists have voiced concerns that Skloot’s book might disrupt current policy arrangements specific to tissue donation and research, our findings suggest that the book may in fact serve to reinforce them.
There are other important implications for the journalistic treatment and communication of bioethics to the broader public. First, in contrast to the emphasis that has been placed on public education to ensure broader participation and enrollment in biobanks, media discussion of the book involves little to no emphasis on a role for the public. This may be in line with a view of the book by journalists and reviewers as mainly a cultural commodity and entertainment product to be reviewed, rather than an important opportunity to discuss biomedicine more broadly. Skloot herself has been acclaimed as a model of marketing and self-promotion, and media discourse for the most part characterizes the public as spectators and consumers rather than as active participants in an emerging policy debate. Similarly, because discussion of the book occurred largely in reviews, author interviews and profiles, the book has yet to serve as a catalyst for in depth news coverage of biobanks and related issues. Extended public radio interviews, however, did allow for richer discussions of bioethics than were featured in the arts and culture section of other news organizations.
The greater attention in opinion articles to ethical themes related to control, access, and patenting suggests that opinion writers and editors more so than other journalists viewed it as their role to use Skloot’s book as an opportunity to raise a broader set of ethical questions. These types of discussions have the potential to contribute to public understanding of the complex ethical issues related to biobanking, especially as there is a lack of consensus on these questions, including the meaning of consent, among both the public and experts . Yet despite this potential, the book has yet to prompt journalistic investigations of informed consent policies and practices, has resulted in very few backgrounders on the ethical and policy issues involved, and has generated little attention to the global growth of biobanks specifically. The best-seller has been hailed as an opportunity to elevate discussion of bioethics in the media more generally, but the failure so far to catalyze these types of stories – along with the narrow framing of ethical issues featured in coverage of the book – suggest that such claims should be re-considered.
Finally, the success of the book should demonstrate to bioethicists and scientists that there is an intense public appetite for compelling narratives about advances in medical research and the ethical issues involved. As has been done in some university reading initiatives, the book’s popularity can serve as the starting point for community dialogue and discussion of a broader and more diverse set of ethical themes and frames of reference. With a major HBO film expected, the film may further widen the scope of public interest and the opportunity for engagement. Such efforts, however, need to be carefully planned and evaluated. Ethicists, scientists, and others should view subsequent media manifestations of the book as opportunities to highlight bioethical issues that would otherwise be under-emphasized in news coverage, commentaries, and reviews.
Join Pulitzer Prize-winning reporter and best-selling author Charles Duhigg as he interviews Victoria Montgomery Brown, co-founder and CEO of Big Think, live at 1pm EDT tomorrow.
Richard Feynman once asked a silly question. Two MIT students just answered it.
Here's a fun experiment to try. Go to your pantry and see if you have a box of spaghetti. If you do, take out a noodle. Grab both ends of it and bend it until it breaks in half. How many pieces did it break into? If you got two large pieces and at least one small piece you're not alone.
But science loves a good challenge<p>The mystery remained unsolved until 2005, when French scientists <a href="http://www.lmm.jussieu.fr/~audoly/" target="_blank">Basile Audoly</a> and <a href="http://www.lmm.jussieu.fr/~neukirch/" target="_blank">Sebastien Neukirch </a>won an <a href="https://www.improbable.com/ig/" target="_blank">Ig Nobel Prize</a>, an award given to scientists for real work which is of a less serious nature than the discoveries that win Nobel prizes, for finally determining why this happens. <a href="http://www.lmm.jussieu.fr/spaghetti/audoly_neukirch_fragmentation.pdf" target="_blank">Their paper describing the effect is wonderfully funny to read</a>, as it takes such a banal issue so seriously. </p><p>They demonstrated that when a rod is bent past a certain point, such as when spaghetti is snapped in half by bending it at the ends, a "snapback effect" is created. This causes energy to reverberate from the initial break to other parts of the rod, often leading to a second break elsewhere.</p><p>While this settled the issue of <em>why </em>spaghetti noodles break into three or more pieces, it didn't establish if they always had to break this way. The question of if the snapback could be regulated remained unsettled.</p>
Physicists, being themselves, immediately wanted to try and break pasta into two pieces using this info<p><a href="https://roheiss.wordpress.com/fun/" target="_blank">Ronald Heisser</a> and <a href="https://math.mit.edu/directory/profile.php?pid=1787" target="_blank">Vishal Patil</a>, two graduate students currently at Cornell and MIT respectively, read about Feynman's night of noodle snapping in class and were inspired to try and find what could be done to make sure the pasta always broke in two.</p><p><a href="http://news.mit.edu/2018/mit-mathematicians-solve-age-old-spaghetti-mystery-0813" target="_blank">By placing the noodles in a special machine</a> built for the task and recording the bending with a high-powered camera, the young scientists were able to observe in extreme detail exactly what each change in their snapping method did to the pasta. After breaking more than 500 noodles, they found the solution.</p>
The apparatus the MIT researchers built specifically for the task of snapping hundreds of spaghetti sticks.
(Courtesy of the researchers)
What possible application could this have?<p>The snapback effect is not limited to uncooked pasta noodles and can be applied to rods of all sorts. The discovery of how to cleanly break them in two could be applied to future engineering projects.</p><p>Likewise, knowing how things fragment and fail is always handy to know when you're trying to build things. Carbon Nanotubes, <a href="https://bigthink.com/ideafeed/carbon-nanotube-space-elevator" target="_self">super strong cylinders often hailed as the building material of the future</a>, are also rods which can be better understood thanks to this odd experiment.</p><p>Sometimes big discoveries can be inspired by silly questions. If it hadn't been for Richard Feynman bending noodles seventy years ago, we wouldn't know what we know now about how energy is dispersed through rods and how to control their fracturing. While not all silly questions will lead to such a significant discovery, they can all help us learn.</p>
A study looks at the performance benefits delivered by asthma drugs when they're taken by athletes who don't have asthma.
- One on hand, the most common health condition among Olympic athletes is asthma. On the other, asthmatic athletes regularly outperform their non-asthmatic counterparts.
- A new study assesses the performance-enhancement effects of asthma medication for non-asthmatics.
- The analysis looks at the effects of both allowed and banned asthma medications.
WADA uncertainty<img type="lazy-image" data-runner-src="https://assets.rebelmouse.io/eyJhbGciOiJIUzI1NiIsInR5cCI6IkpXVCJ9.eyJpbWFnZSI6Imh0dHBzOi8vYXNzZXRzLnJibC5tcy8yMzUzNzU0OS9vcmlnaW4uanBnIiwiZXhwaXJlc19hdCI6MTYxMDc4NjUwN30.fFTvRR0yJDLtFhaYiixh5Fa7NK1t1T4CzUM0Yh6KYiA/img.jpg?width=980" id="01b1b" class="rm-shortcode" data-rm-shortcode-id="2fd91a47d91e4d5083449b258a2fd63f" data-rm-shortcode-name="rebelmouse-image" alt="urine sample for drug test" />
Image source: joel bubble ben/Shutterstock<p>When inhaled β-agonists first came out just before the 1972 Olympics, they were immediately banned altogether by the WADA as possible doping substances. Over the years, the WADA has reexamined their use and refined the organization's stance, evidence of the thorniness of finding an equitable position regarding their use. As of January 2020, only three β-agonists are allowed — salbutamol, formoterol, and salmeterol —and only in inhaled form. Oral consumption appears to have a greater effect on performance.</p>
The study<img type="lazy-image" data-runner-src="https://assets.rebelmouse.io/eyJhbGciOiJIUzI1NiIsInR5cCI6IkpXVCJ9.eyJpbWFnZSI6Imh0dHBzOi8vYXNzZXRzLnJibC5tcy8yMzUzNzU0Ny9vcmlnaW4uanBnIiwiZXhwaXJlc19hdCI6MTY1MTIzMDQyMX0.Gk4v-7PCA7NohvJjw12L15p7SumPCY0tLdsSlMrLlGs/img.jpg?width=980" id="d3141" class="rm-shortcode" data-rm-shortcode-id="ebe7b30a315aeffcb4fe739095cf0767" data-rm-shortcode-name="rebelmouse-image" alt="runner at starting position on track" />
Image source: MinDof/Shutterstock<p>Of primary interest to the authors of the study is confirming and measuring the performance improvement to be gained from β-agonists when they're ingested by athletes who don't have asthma.</p><p>The researchers performed a meta-analysis of 34 existing studies documenting 44 randomized trials reporting on 472 participants. The pool of individuals included was broad, encompassing both untrained and elite athletes. In addition, lab tests, as opposed to actual competitions, tracked performance. The authors of the study therefore recommend taking its conclusions with just a grain of salt.</p><p>The effects of both WADA-banned and approved β-agonists were assessed.</p>
Approved β-agonists and non-asthmatic athletes<img type="lazy-image" data-runner-src="https://assets.rebelmouse.io/eyJhbGciOiJIUzI1NiIsInR5cCI6IkpXVCJ9.eyJpbWFnZSI6Imh0dHBzOi8vYXNzZXRzLnJibC5tcy8yMzUzNzU1MC9vcmlnaW4uanBnIiwiZXhwaXJlc19hdCI6MTYxMzkxODk0M30.3RssFwk_tWkHRkEl_tIee02rdq2tLuAePifnngqcIr8/img.jpg?width=980" id="39a99" class="rm-shortcode" data-rm-shortcode-id="b1fe4a580c6d4f8a0fd021d7d6570e2a" data-rm-shortcode-name="rebelmouse-image" alt="vaulter clearing pole" />
Image source: Andrey Yurlov/Shutterstock<p>What the meta-analysis showed is that the currently approved β-agonists didn't significantly improve athletic performance among those without asthma — what very slight benefit they <em>may</em> produce is just enough to prompt the study's authors to write that "it is still uncertain whether approved doses improve anaerobic performance." They note that the tiny effect did increase slightly over multiple weeks of β-agonist intake.</p>
Banned β-agonist and non-asthmatic athletes<img type="lazy-image" data-runner-src="https://assets.rebelmouse.io/eyJhbGciOiJIUzI1NiIsInR5cCI6IkpXVCJ9.eyJpbWFnZSI6Imh0dHBzOi8vYXNzZXRzLnJibC5tcy8yMzUzNzU1Mi9vcmlnaW4uanBnIiwiZXhwaXJlc19hdCI6MTYzNjI3ODU5Mn0.vyoxSE5EYjPGc2ZEbBN8d5F79nSEIiC6TUzTt0ycVqc/img.jpg?width=980" id="de095" class="rm-shortcode" data-rm-shortcode-id="02fdd42dfda8e3665a7b547bb88007ef" data-rm-shortcode-name="rebelmouse-image" alt="swimmer mid stroke" />
Image source: Nejron Photo/Shutterstock<p>The study found that for athletes without asthma, however, the use of currently banned β-agonists did indeed result in enhanced performance. The authors write, "Our meta-analysis shows that β2-agonists improve anaerobic performance by 5%, an improvement that would change the outcome of most athletic competitions."</p><p>That 5 percent is an average: 70-meter sprint performance was improved by 3 percent, while strength performance, MVC (maximal voluntary contraction), was improved by 6 percent.</p><p>The analysis also revealed that different results were produced by different methods of ingestion. The percentages cited above were seen when a β-agonist was ingested orally. The effect was less pronounced when the banned substances were inhaled.</p><p>Given the difference between the results for allowed and banned β-agonists, the study's conclusions suggest that the WADA has it about right, at least in terms of selection of allowable β-agonists, as well as the allowable dosage method.</p>
Takeaway<p>The study, say its authors, "should be of interest to WADA and anyone who is interested in equal opportunities in competitive sports." Its results clearly support vigilance, with the report concluding: "The use of β2-agonists in athletes should be regulated and limited to those with an asthma diagnosis documented with objective tests."</p>
Certain water beetles can escape from frogs after being consumed.
- A Japanese scientist shows that some beetles can wiggle out of frog's butts after being eaten whole.
- The research suggests the beetle can get out in as little as 7 minutes.
- Most of the beetles swallowed in the experiment survived with no complications after being excreted.