Trend to privacy seen as hurting research

An article in the September 24, 2008 National Post cites a new journal article that concludes that privacy laws are hampering important health research. I haven't read the journal article yet, but plan to. While this argument is not new, I don't agree with the conclusions. I have served on Research Ethics Boards and on a special privacy committees of an REB and I haven't seen that happen.

One researcher is quoted as saying that health research should be exempted from privacy laws, which is, in my view, a very bad idea. Perhaps some tweaking is called for, but a blanket exemption would be a very bad idea and may lead to a backlash against research using identifiable personal information.

Trend to privacy seen as hurting research

Many scientists deprived access to patient data

Tom Blackwell , National Post

Published: Wednesday, September 24, 2008

As Canadians place more and more emphasis on safeguarding personal privacy, the trend is taking an inadvertent toll on medical research, often impeding access to intimate but crucial health information, scientists are warning.

Privacy laws not only make public-health studies more time-consuming and costly, they can also significantly skew research results, argue University of British Columbia epidemiologists in a recent journal article.

"I think it's something that everyone should consider because good research is basically how we make advances in public health," said Anne Harris, lead author of the paper. "We need to be able to trust the results we get."

The paper in the Canadian Journal of Public Health suggests that medical research be exempted in some way from privacy rules.

A leading Ontario scientist echoed the B. C. group's concerns: "A lot of the advances we have had in the past might not happen because of privacy legislation and the way it's interpreted," said Dr. Jack Tu, a cardiac health researcher with a University of Toronto-affiliated institute.