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

ABSTRACT

Background

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.

Methods

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.

Results

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.

Conclusions

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 EthicsBMC 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 [39]. 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.

​There are two kinds of failure – but only one is honorable

Malcolm Gladwell teaches "Get over yourself and get to work" for Big Think Edge.

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Mind & Brain

Do human beings have a magnetic sense? Biologists know other animals do. They think it helps creatures including bees, turtles and birds navigate through the world.

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Freud is renowned, but his ideas are ill-substantiated

The Oedipal complex, repressed memories, penis envy? Sigmund Freud's ideas are far-reaching, but few have withstood the onslaught of empirical evidence.

Mind & Brain
  • Sigmund Freud stands alongside Charles Darwin and Albert Einstein as one of history's best-known scientists.
  • Despite his claim of creating a new science, Freud's psychoanalysis is unfalsifiable and based on scant empirical evidence.
  • Studies continue to show that Freud's ideas are unfounded, and Freud has come under scrutiny for fabricating his most famous case studies.

Few thinkers are as celebrated as Sigmund Freud, a figure as well-known as Charles Darwin and Albert Einstein. Neurologist and the founder of psychoanalysis, Freud's ideas didn't simply shift the paradigms in academia and psychotherapy. They indelibly disseminated into our cultural consciousness. Ideas like transference, repression, the unconscious iceberg, and the superego are ubiquitous in today's popular discourse.

Despite this renown, Freud's ideas have proven to be ill-substantiated. Worse, it is now believed that Freud himself may have fabricated many of his results, opportunistically disregarding evidence with the conscious aim of promoting preferred beliefs.

"[Freud] really didn't test his ideas," Harold Takooshian, professor of psychology at Fordham University, told ATI. "He was just very persuasive. He said things no one said before, and said them in such a way that people actually moved from their homes to Vienna and study with him."

Unlike Darwin and Einstein, Freud's brand of psychology presents the impression of a scientific endeavor but ultimately lack two of vital scientific components: falsification and empirical evidence.

Psychoanalysis

Freud's therapeutic approach may be unfounded, but at least it was more humane than other therapies of the day. In 1903, this patient is being treated in "auto-conduction cage" as a part of his electrotherapy. (Photo: Wikimedia Commons)

The discipline of psychotherapy is arguably Freud's greatest contribution to psychology. In the post-World War II era, psychoanalysis spread through Western academia, influencing not only psychotherapy but even fields such as literary criticism in profound ways.

The aim of psychoanalysis is to treat mental disorders housed in the patient's psyche. Proponents believe that such conflicts arise between conscious thoughts and unconscious drives and manifest as dreams, blunders, anxiety, depression, or neurosis. To help, therapists attempt to unearth unconscious desires that have been blocked by the mind's defense mechanisms. By raising repressed emotions and memories to the conscious fore, the therapist can liberate and help the patient heal.

That's the idea at least, but the psychoanalytic technique stands on shaky empirical ground. Data leans heavily on a therapist's arbitrary interpretations, offering no safe guards against presuppositions and implicit biases. And the free association method offers not buttress to the idea of unconscious motivation.

Don't get us wrong. Patients have improved and even claimed to be cured thanks to psychoanalytic therapy. However, the lack of methodological rigor means the division between effective treatment and placebo effect is ill-defined.

Repressed memories

Sigmund Freud, circa 1921. (Photo: Wikimedia Commons)

Nor has Freud's concept of repressed memories held up. Many papers and articles have been written to dispel the confusion surrounding repressed (aka dissociated) memories. Their arguments center on two facts of the mind neurologists have become better acquainted with since Freud's day.

First, our memories are malleable, not perfect recordings of events stored on a biological hard drive. People forget things. Childhood memories fade or are revised to suit a preferred narrative. We recall blurry gists rather than clean, sharp images. Physical changes to the brain can result in loss of memory. These realities of our mental slipperiness can easily be misinterpreted under Freud's model as repression of trauma.

Second, people who face trauma and abuse often remember it. The release of stress hormones imprints the experience, strengthening neural connections and rendering it difficult to forget. It's one of the reasons victims continue to suffer long after. As the American Psychological Association points out, there is "little or no empirical support" for dissociated memory theory, and potential occurrences are a rarity, not the norm.

More worryingly, there is evidence that people are vulnerable to constructing false memories (aka pseudomemories). A 1996 study found it could use suggestion to make one-fifth of participants believe in a fictitious childhood memory in which they were lost in a mall. And a 2007 study found that a therapy-based recollection of childhood abuse "was less likely to be corroborated by other evidence than when the memories came without help."

This has led many to wonder if the expectations of psychoanalytic therapy may inadvertently become a self-fulfilling prophecy with some patients.

"The use of various dubious techniques by therapists and counselors aimed at recovering allegedly repressed memories of [trauma] can often produce detailed and horrific false memories," writes Chris French, a professor of psychology at Goldsmiths, University of London. "In fact, there is a consensus among scientists studying memory that traumatic events are more likely to be remembered than forgotten, often leading to post-traumatic stress disorder."

The Oedipal complex

The Blind Oedipus Commending His Children to the Gods by Benigne Gagneraux. (Photo: Wikimedia Commons)

During the phallic stage, children develop fierce erotic feelings for their opposite-sex parent. This desire, in turn, leads them to hate their same-sex parent. Boys wish to replace their father and possess their mother; girls become jealous of their mothers and desire their fathers. Since they can do neither, they repress those feelings for fear of reprisal. If unresolved, the complex can result in neurosis later in life.

That's the Oedipal complex in a nutshell. You'd think such a counterintuitive theory would require strong evidence to back it up, but that isn't the case.

Studies claiming to prove the Oedipal complex look to positive sexual imprinting — that is, the phenomenon in which people choose partners with physical characteristics matching their same-sex parent. For example, a man's wife and mother have the same eye color, or woman's husband and father sport a similar nose.

But such studies don't often show strong correlation. One study reporting "a correction of 92.8 percent between the relative jaw width of a man's mother and that of [his] mates" had to be retracted for factual errors and incorrect analysis. Studies showing causation seem absent from the literature, and as we'll see, the veracity of Freud's own case studies supporting the complex is openly questioned today.

Better supported, yet still hypothetical, is the Westermarck effect. Also called reverse sexual imprinting, the effect predicts that people develop a sexual aversion to those they grow up in close proximity with, as a mean to avoid inbreeding. The effect isn't just shown in parents and siblings; even step-siblings will grow sexual averse to each other if they grow up from early childhood.

An analysis published in Behavioral Ecology and Sociobiology evaluated the literature on human mate choice. The analysis found little evidence for positive imprinting, citing study design flaws and an unwillingness of researchers to seek alternative explanations. In contrast, it found better support for negative sexual imprinting, though it did note the need for further research.

The Freudian slip

Mark notices Deborah enter the office whistling an upbeat tune. He turns to his coworker to say, "Deborah's pretty cheery this morning," but accidentally blunders, "Deborah's pretty cherry this morning." Simple slip up? Not according to Freud, who would label this a parapraxis. Today, it's colloquially known as a "Freudian slip."

"Almost invariably I discover a disturbing influence from something outside of the intended speech," Freud wrote in The Psychopathology of Everyday Life. "The disturbing element is a single unconscious thought, which comes to light through the special blunder."

In the Freudian view, Mark's mistaken word choice resulted from his unconscious desire for Deborah, as evident by the sexually-charged meanings of the word "cherry." But Rob Hartsuiker, a psycholinguist from Ghent University, says that such inferences miss the mark by ignoring how our brains process language.

According to Hartsuiker, our brains organize words by similarity and meaning. First, we must select the word in that network and then process the word's sounds. In this interplay, all sorts of conditions can prevent us from grasping the proper phonemes: inattention, sleepiness, recent activation, and even age. In a study co-authored by Hartsuiker, brain scans showed our minds can recognize and correct for taboo utterances internally.

"This is very typical, and it's also something Freud rather ignored," Hartsuiker told BBC. He added that evidence for true Freudian slips is scant.

Freud's case studies

Sergej Pankejeff, known as the "Wolf Man" in Freud's case study, claimed that Freud's analysis of his condition was "propaganda."

It's worth noting that there is much debate as to the extent that Freud falsified his own case studies. One famous example is the case of the "Wolf Man," real name Sergej Pankejeff. During their sessions, Pankejeff told Freud about a dream in which he was lying in bed and saw white wolves through an open window. Freud interpreted the dream as the manifestation of a repressed trauma. Specifically, he claimed that Pankejeff must have witnessed his parents in coitus.

For Freud this was case closed. He claimed Pankejeff successfully cured and his case as evidence for psychoanalysis's merit. Pankejeff disagreed. He found Freud's interpretation implausible and said that Freud's handling of his story was "propaganda." He remained in therapy on and off for over 60 years.

Many of Freud's other case studies, such "Dora" and "the Rat Man" cases, have come under similar scrutiny.

Sigmund Freud and his legacy

Freud's ideas may not live up to scientific inquiry, but their long shelf-life in film, literature, and criticism has created some fun readings of popular stories. Sometimes a face is just a face, but that face is a murderous phallic symbol. (Photo: Flickr)

Of course, there are many ideas we've left out. Homosexuality originating from arrested sexual development in anal phase? No way. Freudian psychosexual development theory? Unfalsifiable. Women's penis envy? Unfounded and insulting. Men's castration anxiety? Not in the way Freud meant it.

If Freud's legacy is so ill-informed, so unfounded, how did he and his cigars cast such a long shadow over the 20th century? Because there was nothing better to offer at the time.

When Freud came onto the scene, neurology was engaged in a giddy free-for-all. As New Yorker writer Louis Menand points out, the era's treatments included hypnosis, cocaine, hydrotherapy, female castration, and institutionalization. By contemporary standards, it was a horror show (as evident by these "treatments" featuring so prominently in our horror movies).

Psychoanalysis offered a comparably clement and humane alternative. "Freud's theories were like a flashlight in a candle factory," anthropologist Tanya Luhrmann told Menand.

But Freud and his advocates triumph his techniques as a science, and this is wrong. The empirical evidence for his ideas is limited and arbitrary, and his conclusions are unfalsifiable. The theory that explains every possible outcome explains none of them.

With that said, one might consider Freud's ideas to be a proto-science. As astrology heralded astronomy, and alchemy preceded chemistry, so to did Freud's psychoanalysis popularize psychology, paving the way for its more rapid development as a scientific discipline. But like astrology and alchemy, we should recognize Freud's ideas as the historic artifacts they are.

U.S. reacts to New Zealand's gun ban

On Thursday, New Zealand moved to ban an array of semi-automatic guns and firearms components following a mass shooting that killed 50 people.

(Photo by Spencer Platt/Getty Images)
Politics & Current Affairs
  • Gun control supporters are pointing to the ban as an example of swift, decisive action that the U.S. desperately needs.
  • Others note the inherent differences between the two nations, arguing that it is a good thing that it is relatively hard to pass such legislation in such a short timeframe.
  • The ban will surely shape future conversations about gun control in the U.S.
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