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HIPPA - privacy. Is this coercive violation of our rights?
Just Want to Talk | Last Active: Oct 2, 2023 | Replies (32)Comment receiving replies
You said, "They are data mining a wide range of information from people from the public they are not entitled to have and would otherwise not have access to."
But, who decides what information people are entitled to collect?
We have no national "Privacy Policy" or "Privacy Law." HIPAA does not apply in this situation because the organization is not either a Health Insurance Company nor a Health Care Provider (nor a Clearinghouse for either one.)
Can you imagine what would be involved in crafting a national Privacy Law, defining every circumstance to which it would apply, aligning it with state and local regulations, and enforcing it?
For example, how would this align with state drivers' licenses requiring corrective lens restrictions, and medically required driving restrictions? Or with the FAA denying pilot licenses to people with uncontrolled seizure disorders? Or schools needing to know about students with Type 1 diabetes requiring staff monitoring?
When you say "I realized my personal+ medical data is the price of admission. And I don't like it. I want this type of coercive privacy violation stopped..." you need to realize this is not coercive, it is voluntary. The organization has the right to allocate its resources in a way that 1)Reserves it to those most in need of their services and 2)Gives them some sort of "payment" in exchange for their service.
Finally, did you read all the "fine print" they included? I am sure that somewhere within it there was a statement similar to "your personal identifying information will not be shared outside this organization" or something similar.
So, what prevents getting our sensitive information disseminated into the wrong hands? Our personal vigilance. All that said, like you, there are times I have declined to participate in many events because I was not willing to share personal medical, financial or social information.
Did you communicate your outrage directly to the organization? If so, what was their response? That is the best way to register you complaint where it can do the most good.
Sue
Replies to "You said, "They are data mining a wide range of information from people from the public..."
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First, this was a medical diagnosis- based-conference. In person and virtual. There is no allocation of resources issue. They are a funded non-profit for this medical condition. They chose not to charge money for watching a conference and giving same-diagnosed people + others the ability to connect if they wished to. There is no comparison to govt services you compared this with. You WERE REQUIRED to answer EVERY PERSONAL AND MEDICAL QUESTION in order to register. They are not healthcare providers! They are an information and support NGO.
In fact, the 'fine print' stated you also release your information, publication of your image ( if captured at the conference or on Zoom ( Zoom was previously the app) and more. And without compensation or permission required.
Yes, l communicated my outrage directly and informed them I withdraw permissions for retention +/or sharing of any + all of my data inc that which may be held in 3rd party databases. I expressed to them exactly my position as I stated here. I added I recognize they do much good but they demand too much in exchange --- submission of extensive personal+ medical data, some of which goes to 3rd parties.
What my view is that they are compiling a database for their own general disease- specific research as well as compling for a pool of potential subjects for emerging medical trials. But whatever the reason, I object to being required to disclose extensive personal and medical information AS A REQUIREMENT to view a medically related informational conference on a medical condition by a non- profit group that's open to the public. It's unrestricted, unlike some actual medical conferences for medical professionals which only require your name and license, or other purpose such as media. HOWEVER, you MUST submit all their required information. You, Sue, are free to have the view they have the right to proceed this way. I don't agree because they are funded and function as an NGO- a medical non profit - tax exempt- agency. I believe they overreach their purpose, and the manner in which they do it, imo, is coercive and imposes unnecessary obstacles to access of information, which is their mission.
This referred situation is SOMEWHAT analagous to being required to submit a detailed form starting w name, DOB, street address, dx, date of dx, stage + type of tx before you can read the article posted on this forum by the Mayo Clinic Dr on the Glimmer of Hope for PASC ( Long Covid) and read and respond to the posts of others. Even this is not an equivilent analogy is because Mayo Clinic is a MEDICAL entity. That makes all the difference.