How Can Literary and Film Studies Contribute to Science Policy? The Case of Henrietta Lacks

This chapter proposes a new model for literary scholars to contribute to large-scale, multiyear collaborative research on public policy that brings together science and the humanities. Clayton and Sisco King discuss the impact of literature, film, and television on public concerns about the privacy of their medical data. Rebecca Skloot’s bestseller, The Immortal Life of Henrietta Lacks, and Oprah Winfrey’s adaptation of the book, serve as a case study that combines analyses of literary texts with qualitative and quantitative research. These works demonstrate that the violation of a patient’s privacy can have devastating and far-reaching effects beyond the individual. It can affect relatives for generations; touch neighbors and friends; and influence attitudes of a still-wider community—in this case, African Americans in Baltimore and beyond.