The Toronto Star
Tuesday, January 9, 2001

Medical files should be owned only by patients

by Thomas Walkom

One of the most peculiar aspects of this age of market glorification - where private property is valued above all - is how little of importance an ordinary human is allowed to own.

We may own stocks and bonds and real estate, cars and coats and CD players. But we do not have property rights over our own bodies. As various isolated peoples around the world have discovered, even a person's genetic make-up can be patented by fast-buck university researchers or multinational drug companies. You don't own your genes. They do.

So, too, with information. Probably the most important non-physical element humans possess are our own histories -- the events, stories, victories and tragedies that shape us.

But we don't own those, either. For most of us, once we tell those stories, they become the property of someone else.

I am always struck by this oddity when the subject of medical privacy comes up -- as it did yesterday on the front page of this newspaper.

"Up for sale: your secret health files" was the headline on the piece by Star reporter Tyler Hamilton. The story went on to describe how health information has become a hot commodity -- in demand from insurance companies, employers, retailers and drug companies.

The key, as the story pointed out, is that this information has to be linked to a specific person, or at the very least, to a specific type of person to make it valuable. Insurers can use medical information to determine whether a customer is a good risk; employers to decide whether to hire or fire.

Pharmaceutical firms can use comprehensive health records for epidemiological research and tracking, retailers for just plain marketing.

Hamilton's story pointed out that both Canadian Tire and the Toronto Transit Commission hire health snoops to check out the records of prospective employees.

Governments are belatedly acting to control this trade in medical information. Ontario's proposed new health privacy law, for instance, will bring private laboratories under its ambit. Currently, according to lawyer David Baker, a private lab can legally sell any health information it collects (such as the result of a person's blood tests) to anyone it wishes. And many do.

But for me, the most puzzling thing about all of this discussion is that it assumes a patient does not have rights over his own medical information. Rather, both federal and provincial law take as given that an individual's health story is the property of someone else -- the physician, the lab, the government, anyone to whom the story is told.

Once I let a lab technician test my blood for, say, hepatitis A, the results belong to the company that owns the lab. The proposed Ontario law would, at best, circumscribe the lab's ability to market that information without my consent.

    Health privacy bill contains
plenty of loopholes

(And as critics, including the Ontario Medical Association, have pointed out, the health privacy bill contains enough loopholes to ensure that this circumscription would not be overly onerous to those wishing to profit from the sale of medical information.)

Baker points out that the proposed law is even worse than current legislation in one aspect: OHIP would no longer be required to correct incorrect information lodged with it by physicians trying to scam the system.

In this, the lawyer knows whereof he speaks: He represents a group of Kingston area residents who are still listed with OHIP as having suffered from alcoholism and psychiatric depression, thanks to a physician -- eventually charged and convicted -- who submitted fraudulent treatment claims to the government health insurer in order to pad his income.

Given the stated bent of Premier Mike Harris' Ontario government, this all seems very weird. The Harris government prides itself on promoting the rights of the individual. It never tires of saying that public money belongs to the taxpayers, which is why it prefers tax cuts to spending on, say, public transit.

Taxpayers, the Harris government says, know best how to spend their own money. Why not then, pay these same taxpayer-citizens the compliment of saying they know best how to handle their own health information? This could be accomplished by simply passing a law specifying that -- save for extraordinary circumstances -- a person has full property rights over his own medical records, that he can fix them when they're wrong and that no one, not even Canadian Tire, has the right to demand them without very good reason.

In effect, it would be like giving a person copyright over his own life -- which seems to me a reasonable use of the concept of intellectual property.

Copyright © 2001 by The Toronto Star. All Rights Reserved. Reprinted with permission.