![]() Tissue samples were taken during her diagnosis and treatment, and portions were passed along to a researcher without her knowledge or permission, as was common practice at the time. The story behind the HeLa cell line is now widely known ( 129): Henrietta Lacks, a 30-year-old African American woman with five children, was diagnosed with an unusually aggressive form of cervical cancer at Johns Hopkins Hospital in 1951. REFLECTIONS ON THE STORY OF HENRIETTA LACKS This review reflects on the role of the HeLa controversy and public opinion data more generally in the development of biospecimen research policy, and the need for informed consent approaches that are guided by realistic aspirations and a balanced view of autonomy within an expanded ethical framework. The story of Henrietta Lacks, her family, and the creation of HeLa cells has been a catalyst for policy change ( 64), including major regulatory changes proposed in the United States for informed consent for biospecimen research. The book is a popular teaching tool and book club favorite ( 138), and the book and its author have been the subject of numerous reviews, news stories, features, commentaries, profiles, and interviews ( 99). The success of this enterprise critically depends on addressing such concerns in ways that are acceptable to patients and the public, and on building and maintaining support, trust, and transparency.Īlthough the ethical and policy issues associated with biospecimen research have long been the subject of scholarly analysis and debate ( 48, 118, 124), the publication of Rebecca Skloot’s bestselling book The Immortal Life of Henrietta Lacks ( 130) captured the attention of a much broader audience. The collection, storage, and research use of biospecimens and data, however, raise deep questions about informed consent, oversight, large-scale data sharing, privacy and confidentiality, commercialization, access to research results, and the ability to withdraw ( 94). In oncology research, for example, biospecimen use has increased dramatically in recent decades ( 67), helping illuminate molecular mechanisms that drive cancer and generating knowledge that, in some instances, has profound implications for risk assessment, diagnostic categorization, and novel therapeutic strategies ( 26). Discoveries from biospecimen research have led to new understandings of human biology and targeted approaches to detecting and treating health conditions, as well as reducing the risk of future disease. Human biospecimens have played a crucial role in scientific and medical advances, and their continued widespread availability for research will be vital to realizing the goals of precision medicine ( 13).
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