← Return to PROMISE Study: Registry of PCa Genetics and Outcomes

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@dailyeffort

It's hard to remember the last time anaything I did was not covered by some written or implied use authorization, disclosure or limit of liability form. In addition, our personal information has been hacked from healthcare providers, both large and small, and insurance companies, most recently 100 million people's private health care information stolen, without any permission or use authorization whatsoever. My benefit from it is 12 months of free credit monitoring.

When it comes to clinical trials in search of the next breakthrough treatment or cure for the cancer that plagues us; it simply isn't going to happen without patient participation. You are correct, there is a risk. Each of us can choose to decline to participate in hopes that others will take the risk and shoulder the responsibility; in which case the the study might not happen or the next breakthrough could be delayed due to lack of participation. Or, I can accept the limited risk, do my part to advance the science for my benefit, that of my family ( I can make them aware of potential hereditary diseases) and the families of everyone else who is, or will be, afflicted with prostate cancer. All of the treatments available to us today are there because those who came before us opted to take the risk. For me, it was a slam dunk decision. I hope others will continue to accept the risk required to end prostate cancer, as well.
Bill

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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.