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Cited by 35Ethics and bioethics in healthcareEthics in Clinical ResearchBiomedical Ethics and Regulation

Bioethics in popular science: evaluating the media impact of The Immortal Life of Henrietta Lacks on the biobank debate

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Nisbet, Matthew C, Fahy, Declan·2013·BMC Medical Ethics
DOI 10.1186/1472-6939-14-10PMC PMC3598530
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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 media 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.

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  • In popular press discussion of The Immortal Life of Henrietta Lacks, informed consent dominated, followed by welfare of the vulnerable and compensation, with scientific progress, patient control, accountability, privacy, public education, and advocacy discussed to lesser degrees.

    “Nisbet & Fahy (99) found that, in the popular press, informed consent dominated discussion of the book. The welfare of the vulnerable and compensation were also prominent themes. Scientific progress, patient control, and accountability were discussed to a lesser degree, and privacy, public education, and advocacy even less so.”

    From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as Nisbet & Fahy [99]

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2 of the 25 references couldn’t be matched to a known paper.

Research works printed but not linked: 4

  1. Mantel H Henrietta’s legacy: Hilary Mantel traces one woman’s extraordinary medical afterlife The Guardian 2010 Review:7
  2. Skloot R Taking the least of you New York Times Sunday Magazine 2006 16715570
  3. Shulman AN What is the body worth? New Atlantis: A Journal of Technology and Society 2012 35 99 115
  4. Forbes S Compelling tale of cell appropriation, ethics Winnipeg Free Press 2010 H9

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Authors
Nisbet, M. C., & Fahy, D.
Affiliations
American University (US)
Corresponding author
Nisbet, Matthew C
ORCID
Venue
BMC Medical Ethics
Publisher
Springer Science and Business Media LLC
Published
2013-02-28
Volume
14
Issue
1
Pages
10-10
ISSN
1472-6939 (ISSN-L)
DOI
10.1186/1472-6939-14-10
PMC
PMC3598530
OpenAlex
W2039148654
Cited by
35
References
25
Citations by year
2026: 4 · 2023: 4 · 2021: 2 · 2019: 8 · 2018: 3 · 2017: 2 · 2016: 2 · 2015: 2 · 2014: 5 · 2013: 3
FWCI
4.09
Type
journal article
Language
en
Open access
Licence
Locations
  • BMC Medical Ethics (publishedVersion, cc-by)
  • Europe PMC (PubMed Central) (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • Figshare (submittedVersion, cc-by)
  • American University Research Archive
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Health Sciences › Medicine › Physiology › Biomedical Ethics and Regulation
Keywords
The Immortal Life of Henrietta Lacks, Rebecca Skloot, biobanks, bioethics, media coverage, popular science, informed consent, donor compensation, donor control, privacy, Henrietta Lacks, media framing
MeSH terms
Australia, Canada, United Kingdom, HeLa Cells, Humans, Informed Consent, Literature, Modern, Mass Media, New Zealand, Social Responsibility, United States, Biological Specimen Banks, Journalism, Medical, Privacy, Moral Obligations, Vulnerable Populations

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