On March 10, 2019, 60 Minutes reported the development of a potentially life-altering gene therapy for Sickle Cell Disease (SCD). Despite this therapy’s potential for cure, SCD community members’ reactions ranged from skepticism to fear due to the use of deactivated HIV as a vector for transporting the corrected gene into stem cells, thus repairing the faulty gene in SCD. Using a mental models framework, we analyze how 60 Minutes attempted to explain this research and how audiences reacted on social media. Specifically, we show how 60 Minutes’ treatment of given versus new information, as well as the journalists’ failure to account for the specific audiences with the most at stake, led to misunderstandings that contributed to ongoing fear and mistrust of the scientific community. We conclude with recommendations for how journalists should approach accommodating science when that science has particular impacts on minoritized and marginalized groups.

Viewing “informing” as a process to protect patients and support autonomy, we undertook a user-centered design process to develop online support for informed consent in pediatric Phase I research trials. Challenges included (a) delivering accurate information to people unfamiliar with medical terminology; (b) delivering this information humanely under time constraints and heightened emotions; (c) allowing users control over the information, while ensuring availability of legally required information. We addressed these challenges through analyses of audience, task, and information design.

In 1994, the Chicago Tribune announced in a blaring page-one story that fraud had been discovered in an important nine-year-old medical study which compared two treatments for early-stage breast cancer. The study had assured women that lumpectomy plus radiation was as safe as the more invasive mastectomy procedure for early-stage breast cancer; however, the revelation of fraud called these results into question. We examine the reactions of two professional medical journals to demonstrate how negotiations for upholding ethical norms in science took place within the pages of these publications. Then, we analyze the public discourse surrounding the fraud and show that much of the coverage was devoted to scandal. Both forums missed opportunities: professional journals ignored a chance to explore the blurry boundary between “writing up” and “making up” results that all scientists must negotiate in interpreting and publicizing data, while public discourse neglected women affected by the fraud.