¶ … HIPAA has made finding subjects for clinical trials easier or more difficult is moot. HIPAA was passed almost twenty years ago. Since 1996, HIPAA rules protect the privacy of test subjects, strengthen informed consent, and have generally changed the culture around these issues, further protecting people who are involved in clinical trials. It's law, and that's what clinical researchers have to work with. Further, the privacy rule was designed with one objective (protect privacy), so evaluating it against another objective (making research easier) is a red herring. The theory is that HIPAA should make it easier to find subjects, but it wasn't written for that so much as just to assuage apprehension about the privacy of medical information. Because HIPAA is law, it doesn't much matter if it has made it harder or easier, the only thing that matters is that practitioners understand the best practices as to how to recruit in the current legal environment. Once a law is passed, worrying about its impacts isn't as important as actually doing what you can to manage those impacts. 2. Considering how old I was when HIPAA was enacted, I can safely say that this is another moot question....

But in the theoretical abstract, I do not believe that privacy protection is a deal-breaker or deal-maker for this decision, at least not for me. Indeed most patients have never heard of HIPAA, don't really understand the issue, and therefore cannot offer a reasoned opinion on the matter. I like that there are better privacy protections than they used to be, but as someone in the health care field I am pretty sure that if a clinical study offered me a chance to make a greater contribution to the field, and had the potential to offer me better treatment than I could otherwise receive, I would do it. My decision to participate in a clinical trial would be related to medical factors and my personal views about the value of clinical trials, and those issues would override any privacy issues, I should think.
As for providing biological material or genetic information, those issues to some extent remove the "can it help me with my condition" part of the above equation. As such, I would be less likely to submit to such tests in general, and with substantially lower upside for me I assume I…