Picture this: U of T transfers you out because of your DNA. While it may sound like a twisted joke to most, this is exactly what happened to a Californian student back in 2012. He was told that because of his genes, he could no longer attend his middle school.
Although he was allowed back to school after his parents took this act of ‘genetic discrimination’ to court, it seems farfetched that a ruling was ever needed to resolve the issue in the first place. “It feels like I’m being bullied in a way that is not right,” he commented in an interview with NBCNews TODAY. It is worth noting that the decision was made because of a potential health risk to two students suffering from cystic fibrosis.
Bill S-201 is currently going through committee revision in the senate, after its second reading. It was first introduced in 2013 as S-218 and subsequently tabled, only to be reintroduced as the Genetic Non-Discrimination Bill by its sponsor Nova Scotia senator James Cowan, a long-standing liberal and lawyer by trade.
Dubbed as “an Act to prohibit and prevent genetic discrimination,” it was first referred to the Standing Senate Committee on Legal and Constitutional Affairs and later to the Standing Senate Committee on Human Rights. S-201 prohibits “genetic testing of any person as a condition in exchange for ‘providing goods or services to that individual’” (3.1a) or as part of a contract. This ensures that the results of genetic testing cannot be collected or used without written consent, though it does not apply to healthcare industry professionals such as physicians, pharmacists, or researchers.
The legislation pertains to giving citizens and employees the right to refuse genetic testing, the choice to disclose results of genetic testing, and the need for written consent if results are to be disclosed. This law would be enforced by a fine of up to $1 million and/or five years jail time if indicted; or up to $300, 000 and/or up to 12 months in jail for a summary conviction.
It also includes provisions to various conventions including the Canada Labour Code, the Privacy Act, the Canadian Human Rights Act, and the Personal Information Protection and Electronic Documents Act. According to the bill, this is done: to extend the aforementioned rights to employees; to incorporate these rights into our human rights; to ensure our personal information now includes our genetic material; and to classify information from genetic testing as personal health information.
According to experts and officials, we are currently lagging behind in terms of legal protection. In contrast, our neighbours to the south have already imposed a Genetic Information Nondiscrimination Act in 2008 and anti-discrimination laws for genetics and health insurance in most states. There are exceptions such as Alabama, which only prohibits the use of genetic information for denying coverage for applicants with sickle cell anemia, because it outlaws considering a “predisposition for cancer in risk selection or risk classification.”
In a 2014 Second Reading Debate, senator Cowan made reference to various pediatricians, geneticists, and even celebrities, notably Angelina Jolie, in an effort to convince his fellow senators that advancement in personalized genetic medicine and research will be beneficial to adults and children alike, but it was being hindered by fears of consequences in insurance and employment. Citing Dr. Ronald Cohn, co-director of Sick Kids Centre for Genetic Medicine, Cowan emphasized that the lack of protection against genetic discrimination was “preventing many Canadians from benefiting from extraordinary advances in medical research.”
On a separate occasion, prominent scholars and researchers have also voiced their concerns for the urgent need for protection against genetic discrimination, including bioethicist Kerry Bowman of the University of Toronto.
The senator ended his speech by raising questions of his own: “Does it achieve its objectives? Are there unanticipated consequences we should be aware of? And of course, are there ways in which the bill could be improved?”
While this bill will be beneficial in advancing genetic research and personalized medicine as it is intended, cautions remain in the broader political landscape.