5 - Working with Public Citizen

Summary

Public Citizen’s Health Research Group is a non-governmental health advocacy organization based in Washington, DC. I have had the privilege of working with the organization over the years beginning in the late 1990s. The activities of Public Citizen are a prime example of bioethics in action, ranging from seeking to have unethical research halted to publishing a volume for consumers entitled Worst Pills, Best Pills: A Consumer’s Guide to Avoiding Drug-Induced Death or Illness. My contributions have included signing on to letters addressed to government officials regarding unethical research, and I have benefited from learning about such research from ongoing communications with the organization. The focus of this article is a controversy over a study of severely premature newborns in which I and colleagues had some difficulty publishing a critique in the New England Journal of Medicine. The Journal’s Editor-in-Chief was a strong defender of that study, and ours was a lone article in the Journal arguing that the informed consent documents were seriously flawed. Among other lessons learned, this experience with Public Citizen serves as a reminder of how difficult it is to challenge high-ranking officials, be they heads of governmental organizations or editors of prestigious medical journals.