Those wondering what their genetic sequence entails can stop, thanks in no small part to the Personal Genome Project Canada, an ambitious new campaign that’s recruiting Canadians to publicly share their genetic info for the sake of improving clinical care. Seems beneficial, right? Except for the privacy risks involved. We consulted St. Michael’s Hospital genomics and policy expert Dr. Yvonne Bombard to find out more.
Doctor, how long has the Personal Genome Project been in the works?
For quite a few years now. The first one was started by George Church in the U.S. in 2005, and that’s been going on for quite a few years. The project in Canada started in 2012, and there is a recent one in the U.K. as well.
How long till the benefits to disease and diagnosis are realized?
We've already seen benefits of genetic testing to improve disease management and treatment. The publicized example of Angelina Jolie might be a familiar case where knowing one’s risk of hereditary breast and ovarian cancer based on genetic testing can inform choices for disease management, like having prophylactic surgery. There are other examples where genetic testing can inform drug dosing and targeted treatment of many cancers. So, genetic testing and risk assessment based on family history has been an established part of standard medical care for decades.
What is novel, however, is the scale of information that we’re generating. Classically, genetic tests evaluated one gene or several genes at a time, and usually in isolation. These new genomic sequencing technologies can assess an individual’s entire genetic sequence.
There are obviously privacy concerns here. Who would be responsible for creating an ethical framework for this?
There are several approaches discussed to protect Canadians against inappropriate uses of genetic information by third parties, such as insurers or employers. The first approach is a law. In the U.S. there is a federal law called the Genetic Information Non-discrimination Act, or GINA, and this law prohibits health insurers or employers from using genetic information in making decisions regarding a person’s eligibility for health insurance or employment.
In Canada, several private members’ bills have been introduced at both provincial and federal parliaments to include “genetic characteristics” in the human rights acts, which would effectively add genetic information to the other grounds that are currently protected from discrimination, such as gender, race or disability. Moratoria are another option. These are voluntary agreements in which insurers agree not to use or request results of genetic tests in setting insurance premiums or determining an applicant’s insurance eligibility. The U.K. has had a moratorium in place since 2001.
So that means there would be certain things, but not everything, that would be visible to insurance companies or employers?
The visibility of the information depends on where the data is held. The personal genome projects aim to share DNA sequences and clinical information of volunteers online in a public fashion to enable hypothesis-generating research worldwide. Therefore this information would be publicly available online. But more commonly, genetic tests are performed in a clinical setting and are kept in medical files, which are confidential.
Have people been hesitant about revealing this sort of info? Because I can imagine many people have been…
Our research shows one of the major reasons that people don't pursue genetic testing is because of the potential that their genetic test results might be used against them by insurers and potentially by employers. This is an important barrier to preventative medicine, especially if they're at high risk for a disease. Genetic testing could offer individuals many therapeutic and management strategies, which they would otherwise be denying themselves because of the potential of genetic discrimination. That is why the Canadian Coalition for Genetic Fairness has been working to establish protections against genetic discrimination in Canada. Given the pace of genomics research and the promise of personalized medicine, it is important to establish protections so that patients and their families can benefit from these advances without the fear of repercussions.
