While predictive genetic testing holds the promise of advancing the understanding of disease, there is also great potential for the information to be misused. Currently, Canada is the only G-8 country without a policy or legislation on the use and collection of genetic information for non-research or health purposes. This is dangerous and could undermine people’s willingness to take part in Canada’s ambitious Personal Genome Project, which aims to make public the genome of 100,000 people, alongside personal profiles that put the DNA sequencing into context, so scientists can study them for the greater good.
This legislative black hole raises troubling issues around privacy rights, as well as the possibility that people could be discriminated against because of genetic markers that predict the onset of disease, including Alzheimer’s, cancer, diabetes and cystic fibrosis.
The interplay between genes and environment is so complex that it becomes impossible to say with certainty whether genetic predisposition actually results in the development of a particular disease. There are legitimate fears that genetic data could be over-interpreted.
“Knowledge about the implications of genetic test information is presently incomplete, even in the science and medical community, let alone amongst third parties in the commercial sector that may have an interest in accessing the genetic information of individuals,” says the Council for Responsible Genetics, a U.S. non-governmental group.
The U.S.’s Genetic Information Non-Discrimination Act bans health insurers and employers from using a person’s genetic information. In contrast, insurance companies in Canada, and even in theory employers, can ask people if they have undergone genetic testing, request the results and then refuse to insure or hire them. Such prejudice already exists, according to Bev Heim-Myers, chair of the Canadian Coalition for Genetic Fairness, particularly among those with a family history of Huntington’s disease.
People’s genetic information must receive a minimum level of privacy and security. Otherwise the considerable promise in genome research for the future treatment and prevention of disease – something of benefit to all Canadians – will never be realized.