Collection, use and disclosure of personal information:
22 (1) The minister may collect personal information under this Act for one or more of the following purposes:
(c) for a prescribed purpose.
(2) The minister may use and disclose, inside Canada, personal information collected under subsection (I) for one or more of the following purposes:
(i) to conduct or facilitate research into health issues;
(k) for a prescribed purpose.
(3) The minister may disclose, outside Canada, personal information collected under subsection (1) for one or both of the following purposes:
(a) to conduct or facilitate research into health issues;
This act gives the government and their friends the right to use our information without our knowledge, must less our consent.
How will it be used? We don’t know. For example, as Vincent Gogolek of FIPA states, a prescribed purpose “could be anything”. He also believes that we should have the right to say NO to having our information shared even anonymously. So, in essence the politicians have given themselves, and their friends, the legal right to do whatever they want with our personal/medical information as opposed to doing it illegally as they have in the past.
Personally, if they want my information, I want to answers to questions such as (for starters) who they are (name of research organization), I want to know what type of research they are doing, I want to know if it is being done outside Canada, if it is being done anonymously, how the information is being protected (with proof). If they want my information they should be required to set up a webpage providing this information. Then I can decide if my information is being shared appropriately. I want them to be transparent so they can be held accountable. They don’t want to be transparent, and therefore accountable, which proves I do have reason to be concerned. Also I want to know what money, or other form of gain, is being exchanged, who pays and who receives.
I would also like more details. The Act is vague (do you know what it means to you?) and if the politicians can’t provide more specifics about what they mean then they don’t know what they are doing or they are trying to hide what they are doing.
Even the privacy commissioner Elizabeth Denham states: “In Bill 35, I have a concern about the broad and unfocused authority for the minister to collect and share personal health information under that act,” she said. Again, it appears the politicians have ignored the privacy commissioner when implementing this act. It appears that, as usual, the privacy commissioner wasn’t even consulted.
According to the Vancouver Sun (a paper I never buy) “Hansen says sufficient safeguards are already in place to assure both the anonymity of records and to ensure they will only be released to responsible researchers.” We are not given the opportunity to determine if these researchers are responsible, only the politicians do that and we know how ethical they are. Also, see my next blog about the latest scandal on patient information being shared, apparently illegally, with researchers (which contradicts Colin Hansen’s statement of safeguards). As usual the politicians will ignore the evidence that our information is NOT being protected and just tell you what they want you to believe (brainwashing).
Our information can now go into other countries. What information is going into other countries? Whose laws apply to our information in this other country? Can our information be accessed under the U.S. Patriot Act (I really don’t believe that all the information shared will be anonymous now any more than it has in the past).
The politicians would have you believe that all researchers are ethical, and moral but they are not. I don’t think that anyone who takes my information without my personal knowledge and consent has any ethics, morals or integrity. And pharmacetical companies, one of (if not the) main funder of researchers, have been charged and convicted numerous times for various illegal acts. Not all research benefits society. In fact, some of it harms society.
Information has been shared with researchers in the past and is supposedly done so under specific circumstances. But as shown in the past, for example the Auditor General’s audit of the Vancouver Coastal Health database and the recent scandal, the rules aren’t followed. The hospitals just give the information and nothing is done to ensure that the information is properly used or protected. There are words on paper and there is reality.
Colin Hansen has been pushing to give our information to researchers while he was in the Liberal government and even now that he has left. I will be interested to hear where he gets his next job or directorship.
Again, if they have to take OUR information without our knowledge/consent, if they have to hide what they are doing with OUR information, then they are doing something wrong, something they don’t want you to know about.
WITHOUT TRANSPARENCY, THERE IS NO ACCOUNTABILITY
AND THERE IS NO DEMOCRACY
Sources:
– Bill 35 – Pharmacetical Services Act
– FIPA – Piecemeal Repeal of FIPPA? – June 1, 2012
– The Hook – Drug Bill Includes Personal Information Grab: Advocate – Andrew MacLeod, April 30, 2012
– Vancouver Sun, Craig McInnes, May 3, 2012