On the news it has been announced that two hospital fundraising foundations are asking the government to incorporate “implied access” to the pending personal health information legislation to enable the foundations to automatically access the names and addresses of patients for the purpose of soliciting money. They are suggesting that if a patient does not want to be on the mailing list they can make application to have their name removed from the mailing list [in the privacy world we call this an “opt-out option”].
While opt-out options are legal, it is arguable that they are unethical. In other words, the default would be that you consent to the use of your personal information for solicitation purposes unless you make application to request otherwise. While the foundations may have the best of intentions, and while the hospitals may indeed advise patients (in the fine print) that their name and address will be provided to the foundation(s), I for one am not comfortable with any form of compelled consent…especially when patients have more immediate concerns and fears on their mind than their long-term privacy. For those of you who have been in the hospital system, have you read all the fine print on the myriad of forms and documents you are asked to read, sign, and/or initial? …especially when you don’t feel well.
Hospitals and hospital foundations are benevolent bodies, obviously with best intentions. Access and privacy legislation provides for a level playing field, and making a special exemption for hospital fundraising foundations would set a precedent. At what point is the line drawn, and who determines whether mailing lists should be provided for solicitation only to hospitals foundations? What about the Hospital Ladies’ Guild? What about other health agencies…nursing homes, Diabetes Association, Arthritis Society, Cancer Society, etc.? What about extending the option to all charitable groups? What to do about those voluntary groups which aren’t registered as a charitable organization?
And where is the accountability for the security and use of the mailing list? Charitable organizations are not subject to any privacy legislation in Canada. There is nothing to stop the sharing or selling of the mailing lists. And not only does the list contain your name and your address…it lets the owner know that you have been in the hospital…value added personal information. As a patient, or family member, how receptive would you be to receiving a solicitation letter sent to you, your child, or your parent who are dying?
The Department of Health will hopefully be asking for public input on this issue. How apathetic are we…are you…willing to be as regards the legislated use of your personal information?
Carla, I share your consents. I disagree strongly with the concept of “consent by default,” as opting out is sometimes not as easy as it sounds, not to mention that, as you point out, people are often stressed in such circumstances and don’t think to look at the fine print. As many have no doubt experienced, I have been forced to phone companies to tell them to opt me out, since there was no easy “click here” option; furthermore, on occasion, my personal information had been distributed already before I could opt out. A number of charities to which I donate don’t even provide you with a clear option: They simply provide the information, with the explanation that I could easily ask to be opted out, even though they never made it clear in the first place that being opted in is the default.
Although the utopian stance is “all things being equal”, I always have concerns as regards the collection, use, and disclosure of personal information by a public body. There is, I believe, an inherent trust that the public body is looking out for the individual’s best interests. No matter how maligned government is by the general public, or special interest groups, there is almost a naive belief that government can make it right. This would then require a higher dilegence on the part of the public body to live up to those implied expectations of trust.