More than $1 billion has been spent on establishing biobanks worldwide
 and the sector’s commercial value is predicted to grow to more than $2.25 billion by 2015
. At least 300 million human samples are stored in U.S. biobanks alone, and this number is estimated to be growing by at least 20 million a year. In the United Kingdom, a government-sponsored biobank launched in 2004 has already enrolled 500,000 donors, processing samples from 700 to 1,000 volunteers a day
. Yet as commercial repositories for tissues, fluids, genetic material, and correlated lifestyle data, biobanks raise a range of questions related to ethics, policy, and communication.
In a recent article at Nature Biotechnology, bioethicists and legal scholars note that “[a]lthough informed consent remains one of the most contested issues of biobank policy, other legal and ethical challenges also require careful attention”
. These include the protection of vulnerable subjects, the safeguarding of privacy, the communication to donors of research results, conflicts over patenting, access, and the need for open science, and the rights of donors to retain a property claim or control over their tissues. Experts more critical of biobank procedures and policies, such as U.S. bioethicist Lori Andrews, have argued the need for a tissue-rights movement in which members of the public become “conscientious objectors in the DNA draft,” a strategy intended to challenge status quo policy
[5, 6] p. 320. Negotiating all of these issues is complicated by a lack of clear national and international oversight
In this study, we examine the media discussion generated by the 2010 best-selling popular science book The Immortal Life of Henrietta Lacks by U.S science writer Rebecca Skloot
. Many bioethicists and commentators have praised the book as a leading opportunity to constructively engage a broader public on the ethical issues related to biobanks and tissue research more generally. The book documents the story of Henrietta Lacks, a young African-American woman who died of cervical cancer at Baltimore, Maryland’s Johns Hopkins Hospital in 1951. Skloot described how cells removed from the body of the mother of five without her permission as she lay dying were given the label HeLa and, for a reason still unknown precisely to scientists, became the first human cell line to survive outside the body, contributing ultimately to vaccines, drugs and treatments for polio, hemophilia, HIV and several forms of cancer. Skloot weaves together three connected narratives: the story of Henrietta’s life; the story of how scientists used her cells to achieve extraordinary medical advances; and the story of how the Lacks family, particularly her daughter Deborah, struggled to come to terms with her mother’s legacy. Running through these stories is the history of exploitation of African-Americans for research by the medical establishment in the United States.
Most biobanks today collect finite amounts of tissue, very few of which are made into “immortal” cell lines as was the case with HeLa. In addition, many biobanks do not use tissues removed during medical procedures, as was the case with 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 herself attempted to generate in media interviews, in the afterward to her book, and in prominent freelance articles.
Biobanks as a communication challenge
In relation to biobanks and ethics, there are several major communication challenges. In order to effectively detect associations between genetic factors, environmental influences, and a specific disease, scientists require biobanks stocked with tens of thousands of samples. As a consequence, biobanks depend on participation from massive numbers of donors, who consent broadly to the use of their biological samples for a diversity of research purposes
. For example, in an effort to understand gene-environment interactions that influence disease across the U.S. population, the National Institutes of Health is considering a study that would involve 500,000 volunteers. Researchers would take biological samples and track subjects across a period of years and possibly decades. Without elevated attention and discussion of biobanks in the U.S., participation at the scale needed for the NIH proposed study is unlikely
However, few members of the public have heard of biobanks, even though their own samples may already be stored or used by researchers. According to a survey analysis conducted in 2010, two-thirds of Europeans were unaware of biobanks, but those who had heard about the repositories were more likely to participate as donors and to give broad consent. The proportion of the public prepared to participate in biobanks varied by country and also depended in part on how much trust citizens in different countries placed in their respective governments. The authors of the European analysis suggest that increased media attention and debate can usefully contribute to greater knowledge and interest in biobanks. “Controversies don’t seem to lead people to reject the idea of biobank research per se,” they wrote. “Instead they facilitate the spread of information, and improve understanding and sharing of views on what is appropriate and acceptable use of samples.” As they conclude: “What is needed is a dialogue with the public, to explain the purposes of biobanks and how they operate, and to give people an opportunity to voice their concerns and conditions for their support and participation”
Communication matters in other ways as well. A 2008 U.S. study employing 16 focus groups comprised of 141 subjects recruited from 6 different cities concluded that information and awareness are not only linked to a willingness to participate in biobank efforts examining gene-environment interactions, but also to a strong preference that the public be given ongoing choices on how research results could be accessed. In this case, public awareness not only appears to create demand for greater donor control and empowerment, but also creates ethical, logistical, and communication challenges specific to the effective and responsible release of research results
Over the past decade, science organizations and institutions have increasingly turned to consultation exercises such as public meetings to facilitate public learning and dialogue about complex policy questions such as those posed by biobanks
. One notable study organized town meetings in 5 U.S. cities, consulting the public on biobank-related issues such as the protection of privacy, the sharing of research results, and the profits made by biotechnology companies
. Yet, as many previous studies suggest, even with increased investment in consultation exercises, the news and entertainment media remain the main forum through which the broadest and most diverse segments of the public are likely to learn about and form at least tentative opinions about complex biomedical topics. In this sense, consultation exercises provide the opportunity and means by which motivated members of the public can learn, discuss, and sort through ethical and legal issues related to biobanks. For much of the rest of the public, the news media and popular culture serve a surveillance function, calling their attention to an issue like tissue research, and in the process, defining its’ significance
The impact of a popular science best-seller
A major critical and commercial success, The Immortal Life of Henrietta Lacks appeared on the New York Times hardcover bestseller list for more than 11 months, and had sold, by 2011, more than 1.25 million copies in the U.S. alone. As of 5 August 2012, the book had been on the New York Times paperback non-fiction bestseller list for more than 18 months. The book is under development as an HBO film by producer Oprah Winfrey, and a young adult edition of the book is planned for readers ages 10 to 14
The New York Times wrote that the book is “from first page to last, a meditation on medical ethics – on the notion of informed consent, and on the issue of who owns human cells”
. The Washington Post said the book was an investigation of “a social wrong committed by the medical establishment”
. Britain’s The Independent on Sunday described the book as “a case study of race and medical ethics, of the problems that plague black society…”
. Novelist Hilary Mantel, writing in The Guardian, noted: “The dark, inhuman face of unpoliced science shows itself throughout this story, side by side with the bright face of discovery and humanitarian advance”
. The U.S National Academies awarded the book a 2011 Keck Prize for science communication, and cited Skloot’s work as: “A compelling and graceful use of narrative that illuminates the human and ethical issues of scientific research and medical advances”
Best-selling science books do not merely engage and educate readers, but they also make policy-related arguments, shape news coverage, and become a topic of wider cultural discussion
. These books make complex scientific and ethical topics meaningful for audiences by presenting them in terms of specific themes and narratives. As organizing devices, narratives provide a specific temporal order of events, arranged in a dramatic plot, creating a rhetorical sequence which reaches a climax that leads to a resolution that helps audiences understand the moral lessons and conclusions to be taken from the story
. In other words, narratives make issues concrete and coherent, meaningful and memorable, emphasizing certain ethical themes and moral judgments over others
. Yet, the choice by journalists like Skloot to focus on some ethical considerations while paying less attention to others can have important implications for how readers understand a complex topic like tissue donation and research
In interviews related to her book, Skloot provided insight on the narrative choices and specific themes that she used to structure her book. She described, for example, the importance of telling a personal story. As Skloot told Niemen Reports: “Among other things, my book is the history of tissue culture and the evolution of bioethics told through the story of a family.” The book’s narrative arc “was really the story of Deborah [Lacks]: her struggle to learn who her mother was, to come to terms with the cells,” said Skloot
. The commercial success and wide public interest in the book has been attributed strongly to the foregrounding of the Lacks’ story. As a review in The Sunday Times (UK) by Bryan Appleyard, noted: “The primary narrative concerns race, poverty – financial and educational – and the abyss that divides the scientific understanding of the human body from the people’s. It is her adoption of this primary narrative that makes Rebecca Skloot’s book such a gripping read”
Yet by strongly foregrounding the individual case of Lacks, Skloot risked not only obscuring other important ethical issues but also limiting reader consideration of deeper questions related to biomedical research and the growing demand for biobanks. In comments, for example, Skloot noted that she intended the book to serve as a warning about the dangers of treating life instrumentally and of the need to think broadly about history, policy arrangements, and governance. As she told the Wisconsin State Journal: “It’s really important for scientists in general to think about the fact that there are human beings behind every biological sample that we use in a laboratory . . . Also, it's a story about how scientific progress happens faster than the regulations that govern it”
. She also told The Calgary Herald that the book relates to several current health policy issues, including access to health care for minorities, science education, and the importance of scientists communicating with non-specialists
Skloot attempted to balance the personalized focus of the book’s main narrative with a 13-page afterward that reads like a more broadly contextualized policy brief. Yet even in this case, Skloot makes specific choices about how to define the relevant ethical issues involved in tissue donation and research. As she writes:
There are, essentially, two issues to deal with: consent and money. For most people, knowing if and how their tissues are being used in research is a far bigger issue than profiting from them. Yet when this book went to press, storing blood and tissues for research did not legally require informed consent, because the law governing such things doesn’t generally apply to tissue research  p. 317.
Her afterward and the specific themes emphasized mirror closely a 7,500 word feature that Skloot published at the New York Times Magazine
in 2006. The feature, subtitled “The Tissue Industrial Complex,” is noteworthy for not mentioning the Henrietta Lacks case, but instead foregrounding at the opening of the article the growth in tissue storage and a corresponding lack of clear regulatory and governing arrangements. Yet in defining more broadly the problem, Lacks again leads readers back to informed consent as the solution. The apparent implication is that as long as informed consent is satisfied, then other questions such as donor control become secondary. Consider a leading example from the article, in which she discusses two major historic cases:
“The difference between Ted Slavin and John Moore wasn’t that Slavin owned his tissues and Moore didn’t . . . The difference was information. Someone told Slavin that his tissues were special and that scientists might want them. So he was able to control his tissues by establishing his terms before anything left his body. In other words, he was informed, and he gave consent. In the end, the question isn’t whether people have the ability to control their tissues; it is how much science should be obligated (ethically and legally) to put them in a position to do so” .
To date, even among academics, there has been limited in-depth analysis of the book’s substantive treatment of the ethical and policy questions related to tissue research, donation, and biobanks. An exception is an 18 June 2012 review essay that appeared at the conservative journal The New Atlantis. Writer Ari N. Schulman critiques efforts to allow the market to govern decisions about research, and warns that Skloot’s emphasis may lead others to view informed consent as a “panacea” for a range of unaddressed ethical problems
In addition, there has yet to be a systematic analysis of how Skloot’s book has been discussed in media reviews, coverage, and commentary. 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 books can play in reaching wider audiences, the purpose of this study is therefore to systematically evaluate the ethical themes emphasized in the media coverage generated by the book.