In recent years, biobanks for human tissue sampling have become an emerging and fast-growing industry. Nowadays, an estimate of $1 billion is spent on biobanks worldwide and there are over 300 million tissues samples stored in US biobanks. However, the fast pace of industry growth was not accompanied by sufficient information provision to the public regarding the legal and ethical concerns of tissue sampling. As a result, participants were reluctant to participate in research studies. In fact, a survey analysis conducted in Europe in 2010 concluded that two thirds of Europeans were unaware of biobanks but were willing to donate and give broad consent once sufficient information was provided. Effective communication in the field of bio-repositories additionally contributes to constructive feedback from the public to the government and research institutions, leading to a more responsible release of research – one that considers and respects human subjects.
In 2010, Rebecca Skloot’s bestseller The Immortal Life of Henrietta Lacks shed the light on the ethical issues accompanying tissue sampling. The novel tells the story of Henrietta Lacks whose cell lines were obtained, without consent, at the time of her death and contributed enormously to vaccines, polio, hemophilia, HIV and several cancer researches. Contrary to scientific reviews, the narrative aspect of the novel rendered it both accessible and attractive to the common readers hence, increasing the layperson’s knowledge about research ethics. The purpose of the study was therefore to systematically evaluate the ethical themes emphasized in the media coverage generated by the book.
Skloot’s controversial bestseller was followed by numerous reviews, debates as well as television interviews in which some of the main ethical themes were introduced and explained to the public. In the 125 articles and transcripts that were studied, the most discussed themes were those relating to human subjects’ protection – informed consent (84%), welfare of the vulnerable (54.4%) and compensation (72%). Other, less discussed themes included scientific progress (34%) followed by privacy and advocacy (26.4%). Correlations between the similar ethical themes were calculated in order to obtain two accounts – the diagnostic and the, subsequent, prescriptive accounts – of the Lacks issue, in specific, and tissue research, in general.
The first group included the themes of consent, welfare and compensation in correlation with welfare and control. It was concluded that in order to preserve welfare (diagnostic account), consent, compensation and control (prescriptive accounts) were necessary. The second group included the themes of accountability, education and advocacy in correlation with accountability and privacy. Similarly, education and advocacy were prescriptive accounts to the diagnostic accounts of privacy and accountability.
Inevitably, Skloot’s book raised public awareness and involvement in the once mysterious and feared field of bio-repositories. The non-scientific community is starting to finally form an opinion on scientific research topics. The book, nonetheless, limits the public’s critical role by solely providing the narrator’s perspective on the issue – offering narrow solutions to wide, debatable ethical issues. The presence of multiple implicating factors, certainly other antecedents’ sources of information, further questions the extent of the impact of Skloot’s novel on the public opinion. Hence, it is compelling that bioethicists profit of the novel’s success to introduce broader and more comprehensive clarifications on the matter of tissue sampling.
Nisbet, M. C., & Fahy, D. (2013). Bioethics in popular science: evaluating the media impact of The Immortal Llife of Henrietta Lacks on the biobank debate.BMC medical ethics, 14(1), 1-9.