Should our DNA be used for corporate profit? Human Rights Committee reviews future of Canadian genetic testing

DNA orbit animated static thumb Should our DNA be used for corporate profit? Human Rights Committee reviews future of Canadian genetic testingAccording to CBC News thousands of Canadians are still opting out of genetic testing that could give them valuable information to possibly reduce risks for debilitating or life-threatening illnesses in their own lives, or knowledge that could inform their children’s medical futures. With Canada being the only G7 country with no form of protection against genetic discrimination, its citizens have reason to fear that such tests will be reported to insurance companies, raising premiums or hurting their chances of being eligible for coverage. In some cases, they fear employers requesting this information and that it might compromise their careers.

A senate bill known as the genetic non-discrimination act (Bill S-201) introduced by Senator James Cowan in early 2013 is in its second hearing and has been referred to the Senate’s human rights committee, which gets it one step closer to making it to law. Once it passes its third reading, it will then be sent to the House of Commons, which is the last major hurdle before the bill can become law.

Here in the United States, the Genetic Information Nondiscrimination Act (GINA) was passed into law in 2008. GINA protects Americans from discrimination in health insurance and in employment.

It is illegal for health insurance providers to use or require genetic information to make decisions about a person’s insurance eligibility or coverage, or for employers to use the same information in making hiring and promoting decisions. However, GINA does not protect information used for other forms of insurance such as life, disability, or long-term care, nor does it cover people using TRICARE military health system, the Indian Health Service, the Veterans Health Administration, or the Federal Employees Health Benefits Program. Nor does it apply to employers with fewer than 15 employees.

Americans are not protected from genetic discrimination in every circumstance, but they are years ahead legally in terms of protection when compared to the Canadian system, whose citizens are coming up against statements such as this provided to CBC News:

Frank Zinatelli, the The Canadian Life and Health Insurance Association vice-president and general counsel, says if the insurance industry were prevented from asking for genetic test results, it would raise premiums for everyone.

“If we don’t charge the right amount to one individual and then later we find out we made a mistake, we charged $100 when we should have charged $500 premium, then we are going to have to charge the next applicants to cover that extra $400,” said Zinatelli.

Why is it that corporations have the right to view our very own DNA almost as soon as we’ve seen it ourselves and in order to have privacy of our own test results it takes years of legislative proceedings and human rights hearings, but we don’t have the same right to demand that corporations disclose the results of clinical tests and research with regard to their products which might influence our opinions of them?

For example, Johnson and Johnson is in the midst of hundreds of lawsuits claiming that the company was aware of the decades of research that have found that talc used for feminine hygiene increases risk of ovarian cancer and they neglected to warn consumers. Although they have already been found liable in one case that’s gone before a jury, the company never considered that it was its responsibility to warn the public by acknowledging the results of these studies.

That is just one example. In an article on Big Pharma last year, The Daily Beast exposed some of the lengths to which companies will go to suppress information that will hinder their profits, such as “destroying” “uncooperative physicians” for reporting negative side effects in drug trials.

It seems like legislation is skewed automatically in favor of the corporation, while the individual has to fight for his or her rights. If a woman in Canada took a DNA test and discovered she carried a faulty copy of the BRCA1 gene, which put her at higher risk of getting ovarian cancer, her health insurance provider would legally have access to the results of her test and could use this information for their own profit.

If the same woman were using talcum powder, which had been marketed specifically for feminine hygiene and never been labeled with a warning that it could put her at a higher risk of developing ovarian cancer she, or in the case of ovarian cancer victims, her family, would not be provided with the critical information.

These women and their loved ones. should be legally compensated. Why should corporations be allowed to both invade privacy and withhold vital information for the sake of profit?

CBC News
The Daily Beast
Righting Injustice