Law professor Errol Mendes calls for a regulatory framework to protect human rights in the new age of genetic testing.
A simple blood test could soon see Canadians being turned down for a job, passed over for a promotion, or refused insurance. Already, evidence is mounting that being predisposed to developing certain diseases carries more than just health risks: it could also affect their civic rights.
A 2009 study from the University of British Columbia surveyed Canadians at risk of developing Huntington’s—a degenerative brain disease with no cure or treatment. Forty percent of the respondents said they had experienced discrimination because of their risk of developing Huntington’s, though none of the respondents showed any signs of the disease. Their family history was cited as the main reason for discrimination.
Since then, genetic testing has only gathered momentum. Today, Canadians can bypass doctors and use direct-to-consumer genetic screening for as little as $200. But what society will do with the results poses some troubling questions. In the future, will people, even entire ethnic groups—be categorized into social and economic streams that predetermine their lives?
“If we do not start thinking seriously about the potential for genetic testing to result in social engineering, then what seems like a science fiction dream today may turn into a nightmare tomorrow,” says Errol Mendes, a professor in the Faculty of Law at the University of Ottawa. He also serves as a commissioner on the Ontario Human Rights Commission.
Genetic discrimination is already well documented in the United States, where genetic testing has been available for longer. The Council for Responsible Genetics has recorded more than 500 cases of genetic discrimination, where people have been barred from employment, or lost their health and life insurance based on a perceived genetic abnormality.
Mendes’ experience blending theory and practice to study human rights questions as a law professor and human rights commissioner has him deeply concerned by the pace of change and society’s ability to protect people. “By the time a case comes before the Ontario Human Rights Tribunal of Ontario, four or five years may have passed since the initial complaint,” he says. “By then, it can often be too late to help someone who has been passed over for a job, or denied insurance.”
The marriage of cheap genetic tests and the power of the Internet also concerns Mendes. “We could face grave threats to privacy from appropriation of confidential information on the Web.”
Despite his misgivings, Mendes is quick to acknowledge that genetic testing holds huge promise for healthcare policy and personal health choices. That’s why he suggests that we should take certain steps to ensure that genetic testing is a blessing, not a curse.
In Canada, scientific progress appears to be rendering legislation outdated. The Canadian Human Rights Act was written in 1985 and the Human Genome Project, the international research project to map human DNA, began in 1989. In the last session of Parliament, a private members’ bill, C-536, asked to add genetic characteristics to the Act. Mendes supports this approach but cautions that it won’t be enough by itself.
Another aspect of genetic discrimination, he points out, is that substantial numbers of people who have suffered from it may be afraid to start the process out of fear that it may endanger their future job prospects or access to insurance. “Support organizations for diseases such as Huntington’s have received reports that their members have suffered genetic discrimination but have not wanted to trigger the human rights process. This means we need a regulatory framework to deal with genetic testing.”
Several European countries, including Austria, Belgium and Norway, have mandated that insurance companies cannot ask for predictive testing or ask for results already in existing medical files. Mendes says that a comprehensive framework of stand-alone legislation could include establishing a specialized oversight body, along the lines of the Human Genetics Commission. He also points to the United States Genetic Information Non-Discrimination Act, passed in 2008, and the efforts of at least 45 states to regulate the use of genetic data, including 35 states who explicitly prohibit genetic discrimination in employment.
“There is no doubt that pre-emptive regulation is far better than dealing with a potentially huge backlog of individual complaints before human rights tribunals or privacy commissioners,” Mendes says. No matter what course Canada chooses to take, equality will have to remain at the core of our understanding of human rights if we are to safely unlock the huge potential of genetic testing. “If, as has been predicted, at birth all humans had a genetic profile which will predict their entire life’s health history, that would pose the ultimate test of society’s commitment to the ultimate test of human dignity—to be fully human is not to be genetically perfect.”
by Matthew Bonsall
Genetic Testing and You
We all have dozens of genetic differences that could increase or decrease our chances of developing a disease like cancer, diabetes, heart disease, multiple sclerosis or Alzheimer’s. Knowing the risk could help improve your health.
But if you opt to get yourself tested, could it mean that your results could be used to justify higher insurance rates? Or deny coverage? The answer is yes.
“The industry’s policy is that insurers would not require an applicant for insurance to undergo genetic testing. However, if genetic testing has been done, and the information is available to the applicant for insurance and/or the applicant’s physician, the insurer would request access to that information just as it would for other aspects of the applicant’s health history.”
– Canadian Life and Health Insurance Association position statement on genetic testing, April 2010