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DiscussionPROMISE Study: Registry of PCa Genetics and Outcomes
Prostate Cancer | Last Active: 8 hours ago | Replies (26)Comment receiving replies
Replies to "It's hard to remember the last time anaything I did was not covered by some written..."
I'm potentially interested but am having trouble what you previously posted as their privacy policy versus: "Your name and identifying information will always be kept private. We will never share study reports that provide personal details about any specific individual."
with what @chippydoo posted: "Those persons who receive your health information may not be required by Federal privacy laws (such as the Privacy Rule) to protect it and may share your information with others without your permission, if permitted by laws governing them."
Yes, I've been among the millions impacted by data breaches but as far as I'm concerned, there is no reason for a research study to share or disclose medical information that has not been de-identified.
So is the Promise project only collecting and then disclosing de-identified data or not? Thanks so much.