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.