Genetic Discrimination: Beware
Genetic testing is opening a world of knowledge, with over 1500 genetic tests now available and hundreds of genetics and genomic studies underway. The potential for people to learn about their disease susceptibilities, improve their treatment decision-making, avoid exposure to unnecessary interventions, improve health outcomes and make informed life planning decisions is growing daily. In the near future, consumers will be able to obtain a personal genome scan and more detailed genetic risk information; however, there is a downside. Once you have obtained your genetic information, who else can access it and what will they do with your information? We have asked two experts to discuss issues surrounding genetic discrimination and the privacy of genetic information.
Yvonne Bombard, PhD
Researcher, University of Toronto, Faculty of Medicine
and Canadian Coalition for Genetic Fairness
What is genetic discrimination?
“Genetic discrimination is the use of genetic information – whether it is perceived or actual – against a person,” says Yvonne Bombard, a researcher in the University of Toronto’s Faculty of Medicine. “This could be information concerning whether you are at risk for a certain genetic disease or information from a genetic test that shows you do or do not carry a mutation that would predispose you to developing that disease or disability in the future. Genetic information could expand broadly to include family history information or it could be narrow in scope and just encompass things such as DNA-based information, chromosomal-based information, or information from similar sorts of tests.”
Is genetic discrimination happening in Canada?
In a study of Canadians at risk for Huntington disease, published in the British Medical Journal in June 2009, nearly 40% of respondents reported to have experienced discrimination. Lead author of the study, Bombard notes, “Life and disability insurance companies were the main source of discrimination, with 29% of respondents reporting that their application for coverage was rejected, their premiums were increased, or they were asked to take a predictive test before they could obtain insurance coverage or move forward with their application. Just under 7% reported employment-based discrimination.”
Members of the Canadian Coalition for Genetic Fairness, which represents many conditions, including Parkinson’s, also report anecdotal evidence that discrimination is occurring in Canada.
Why do we need protection against genetic discrimination?
The amount of genetic information collected and stored in publicly funded biobanks is growing exponentially. There is concern that, without protection, this information could be used outside of the context of health care and medical research, possibly by insurance companies or employers who might use or misuse the information. “Considering how rapidly genetic screening technology is progressing, it is important to have protection around genetic discrimination for Canadians,” says Bombard.
Fear of genetic discrimination is preventing positive uses of genetic information. It is preventing people from participating in research. “This slowing of the research agenda is a huge concern,” says Jo Anne Watton, Chair of the Canadian Coalition for Genetic Fairness and Director of Individual and Family Services, Huntington Society of Canada. “In diseases such as Parkinson’s disease, we need everybody on deck to know their genetic status and participate in research so we can move forward and get effective drugs and treatments. However, if people are afraid to come forward then that’s just one more barrier.”
What protection is currently available in Canada?
In Canada, there are no policies or laws in place that specifically include genetics as a “prohibited ground” for discrimination. In documents such as the Canadian Charter of Rights and Freedoms, the Canadian Human Rights Act and Personal Information Protection Electronic Documents Act, genetics may be interpreted or captured under the scope of disabilities. However, even under disabilities, these documents do not address the concept of future disability or perceived disability, nor do they prevent discrimination from taking place. They offer remedies after the discrimination has occurred, which puts the onus on the victim of discrimination to make the complaint and seek appropriate legal action which is frequently a lengthy and expensive process.
How does Canada compare with other countries?
The Canadian Coalition for Genetic Fairness, of which Parkinson Society Canada is a member, has noted that Canada is lagging behind other countries and international organizations. The Council of Europe’s Convention on Human Rights and Biomedicine explicitly prohibits genetic discrimination. In 2008, the United States passed the Genetic Information Nondiscrimination Act (GINA) which protects Americans from discrimination in health insurance and employment. This includes genetic services (genetic tests, genetic counselling, or genetic education) received by an individual or family member participating in clinical research. Protection under GINA does not extend to people who are outside of the US and avail themselves of recreational genomics testing by US-based direct-to-consumer genetic testing companies that sell their services over the Internet. Canadians who participate in direct-to-consumer testing may not be aware that there is no protection.
In this age of the Internet, social media and increasing knowledge about a genetic component in many diseases, is it possible that genetic privacy concerns may be overrated?
“Some people are nervous about how their information is going to be used; others are quite open,” says Bombard. “There is a personal orientation to these risks but there may also be risks to other members of the family.”
Watton raises the question of ownership. “If I buy a genetic test kit, who owns my genetic information? That’s rich data that I want to be in the hands of people who are going to do good work with it, if that’s something I want to participate in, but who owns that data?”
What is being done to help prevent genetic discrimination?
Private Members’ Bill C-536, which was introduced in the House of Commons in April 2010, calls for an amendment to the Canadian Human Rights Act to protect Canadians from discrimination on the basis of their genetic characteristics. The Coalition supports this motion and the Parkinson’s community is encouraged to get involved. To learn more, read the Call for Federal Action on Genetic Discrimination on Parkinson’s Society Canada’s website.
As well, Parkinson Society Canada has participated in a series of public policy workshops hosted by Genome Canada addressing genetic discrimination. Among the policy options being explored are: strengthening existing human rights laws; strengthening existing data protection laws; the introduction of a comprehensive regulatory framework; and sector-specific solutions in the context of insurance. To learn more about the series, read the background materials and view the podcasts, visit Genome Canada’s GE3LS web page and click on Policy Portal.
UPDATE: On June 10, 2010, the US Food and Drug Administration sent regulatory letters to five direct-to-consumer genetic testing companies requesting that they obtain FDA approval or clearance for their tests. The companies are: 23andMe, deCODE Genetics, Illumina Inc., Navigenics and Knome.