3 ms·
> Nothing in the proposed rule compels the disclosure This is blatant disingenuousness. What they are saying is "you need not disclose private information, bu
by jhayward 8y ago
> Nothing in the proposed rule compels the disclosure
This is blatant disingenuousness. What they are saying is "you need not disclose private information, but we won't use your study if you don't".
- refurb 8y agoNo they aren’t. They are saying “we already have ways of sharing data and not violating privacy”.
- jhayward 8y agoYes, they are. Do you have any familiarity with studies conducted under a human study IRB permission? Please cite one that would permit sufficient sharing with the public of the detailed information needed to replicate the study. Even just sharing one personal detail, such as gender, or age, is almost always completely forbidden. Also, please don't be so credulous. This rule has been promulgated, invented, and proagandized by people who are trying to hamstring the EPA from using scientific studies to regulate industry. It's not new, it's just newly empowered. You appear to be falling for the plausible cover story, which is disinformation. People are really bad at being able to discern the intent behind "plausibly good" organizations and movements.
- refurb 8y agoThere are plenty of published human studies where raw, anonymized patient level data is shared.
- smsm42 8y agoNope, they are saying "disclose information in ways that do not violate privacy, ask us how if you don't know how to do it, we're already doing it. But if you don't bother, only then we won't consider your study".