I have nothing but the highest respect for Sharon Terry, who took extraordinary steps to understand and find treatment for her children's condition. I realize that her experience has made her passionate advocate for open access, but I am not sure that's the conclusion I would draw. Why should parents have to go to heroic, extraordinary lengths--in effect, training themselves as molecular biologists--to understand a child's genetic disorder? Unlike Ms. Terry, many will never be able to read the primary literature even if it were freely accessible. I would think that rather than proposing to help patients by promoting OA, the NIH could do far more good by creating a patient-centered database of genetic disorders, with the latest information on incidence, etiology, diagnosis, and treatment--and, perhaps more importantly, a list of any clinical trials and leading investigators for the disease. Understanding the disease is important, but even more so is finding a research clinician who can help the family find the latest treatment protocols. OA seems neither an efficient not an effective way to help parents in situations like Ms. Terry's. Worse, the singular focus on it may be hindering discussion of how else the Internet might be used to help patients and their doctors. Peter Banks Banks Publishing Publications Consulting and Services Fairfax, VA 22030 pbanks@bankspub.com www.bankspub.com www.associationpublisher.com/blog/