Currently here in Canada, you can find out, in the privacy of your home, whether or not you are at risk for a host of genetic conditions. All you have to do is obtain a home testing kit and provide a DNA sample (saliva or blood) through the mail. When the results are in, you can view them on your computer. Sounds easy, right? Wrong. Legal issues have sprung up like weeds all over the hillside of this new medical frontier. Before you decide to purchase a home testing kit, consider the ramifications. You may want to consult a lawyer as well.
New wave of genetic testing
Prior to the advent of home genetics testing, you would have to go to the office of a genetics specialist and pay a lot of money for a battery of genetic tests. That's because, in routine medical practice, these tests are not done simply because you are curious about your genes. Rather, if while under a doctor's care it is deemed necessary to know more about your predisposition to certain conditions, your doctor will order one or more tests specific to your situation.
Enter 23andMe, a DTC (direct to consumer) genetic testing company founded in the United States in 2006. While the company has gone some battle rounds with the Food and Drug Administration there, even to the point of being prohibited from disclosing medical results to clients, Canada has no such prohibitions in place. 23andMe began offering both ancestry and health-related testing components to Canadians in October 2014. Another company, EasyDNA, offers similar services.
Not so fast, there
While it sounds compelling to have access to genetic information for just $199--without the hurdles of insurance preauthorization or physician referrals--you would be wise to hear the rest of the story. Most importantly, insurance companies and employers might be able to access the information in your results and use it against you. Consider these scenarios:
Your results indicate you are at high risk for heart disease. You are consequently unable to obtain life insurance--or it costs far more than it does for another person your age whose genetic information is unknown.
Your results indicate you are at high risk for alcoholism. A potential employer, to whom you are obligated to reveal this information, decides not to hire you because you may be a liability to the company in the future.
Your results indicate you are at risk for breast cancer. When you apply for health insurance, you are denied.
Genetic discrimination is a very real possibility if you opt for home testing.
Genetic discrimination is more than just a hypothetical fear, however--it is already happening to people in this country. For instance, consider the case of a woman who was denied critical illness insurance because she had tested positive for a gene predisposing her to breast cancer--even though she had already opted for a double mastectomy to prevent it. Or another woman who was required to prove she didn't have the gene for Huntington's disease in order to get the insurance coverage she needed to set up her business. In fact, nearly 40% of people surveyed who were at risk for this disease had experienced discrimination, mostly from life and disability companies--although a few had run-ins with employers over the issue.
Canadian lawmakers are scrambling to put stopgaps in place to protect citizens from genetic discrimination. Senator James Cowan authored a bill called, "An Act to Prohibit and Prevent Genetic Discrimination" in 2013. This bill would accomplish three objectives:
Prohibit forced genetic testing as a condition of employment or obtaining a service.
Prohibit forced disclosure of private genetic testing results.
Amend the Canadian Human Rights Act to include limits on genetic discrimination.
However, this bill has not yet passed and has marked limitations--namely that it only covers federal employees.
So what should you do if you are curious about your genes? First, talk to your physician. If it is medically advisable to screen for certain genetic conditions, you can have the tests done under your insurance coverage, and the results will be protected under privacy laws.
If, however, your doctor denies your request--or you simply want to go ahead with testing on your own--consult a lawyer before you purchase a home testing kit. A lawyer will be able to get you additional info as to the legal status of home testing results in your area. The money that you pay for a consultation may be well worth it if it protects you from unconsidered consequences.