Wafik El-Deiry in The Cancer Letter:
Some, including me, may be suffering from Chronic Password Fatigue Syndrome (CPFS would be the acronym). Scientific publishing, peer review and paywalls are a very problematic area that contributes to disparities around the world, among other disparities in research and clinical oncology that I have previously pointed out. Irreproducibility of scientific results has gotten lots of attention, although real solutions have yet to address the problem. As one thinks about how we got here, it helps to have lived through the evolution and to have a foot in both medicine and science. Actually, more than a foot. What follows is opinion but maybe it will help connect some dots.
In the mid- to late-1990s, HIPAA privacy rules came on the scene, due to efforts by Hillary Clinton and others. Having completed medical school in Miami, medicine and oncology training at Johns Hopkins, and having started a faculty position at University of Pennsylvania before HIPAA, I can assure anyone reading this that there was no major deluge of privacy violations.
There were some anecdotes where some nosy people looked at health records of celebrities, and there was some concern by the early- to mid-1990’s that genetic information may be used against people who would be discriminated against by employers or insurance companies. But there has been a law against genetic discrimination, and it’s a good law, separate from HIPAA. Hillary meant well, but no one anticipated the downside of HIPAA.