A Look at Genetic Privacy in Canada
Imagine being told that you could not attend a certain school, do a certain job, or be eligible for insurance based on information from a genetic test. These are the sorts of consequences that could arise in a world without genetic privacy. Genetic privacy is the protection of personal genetic information, and as current research continues to improve the accessibility and accuracy of genetic testing, it becomes critical to consider how this information should be stored and who should be able to access it. If genetic information were publicly available, it could have profound impacts on the day-to-day lives of people living with genetic abnormalities. Additionally, it also has the potential to discourage individuals from becoming more aware of their health, for fear of potential discrimination.
As genetic testing becomes more prevalent, ethical questions surrounding genetic information continue to arise. In 2012, then 11-year-old Colman Chadam was asked to transfer schools due to genetic information contained within his medical records.1 The records stated that Chadam had a genetic predisposition to cystic fibrosis. Since another student at the school had cystic fibrosis, and two individuals with the disease should not be in close contact (as it increases both of their risks of infection), the boy was asked to leave. This request, though intended to protect the health of both students, was based entirely off a genetic marker identified in Chadam’s medical records, without regard for the fact that he did not actually have the disorder.1 Although the boy was later allowed to return to school, the case exemplified one of the many ways in which people can be discriminated against because of their genetic makeup. Genetic information also has the ability to impact a person’s employment prospects and their ability to receive insurance. In 2001, a railroad company in Iowa collected blood samples of workers who developed carpal tunnel syndrome to determine if the individuals had an associated genetic condition that may be responsible for the symptoms.2 Workers were threatened with discipline if they did not consent to the blood test, and some workers state they were not informed the samples would be used for genetic testing.2 It is not difficult to imagine a world where individuals are denied employment or insurance due to the information genetic tests can contain. It is therefore important that laws be put in place to protect individuals from discrimination based on the results of genetic testing, and that genetic testing occurs only with proper regulation and consent.
“Legislation does need to be implemented to ensure that Canadians receive the best healthcare and testing possible, without fear of discrimination, and that individuals living with genetic abnormalities are awarded the same opportunities as any other Canadian. ”
In 2008, the United States passed the Genetic Information Nondiscrimination Act (GINA), comprised of two parts.3 The first states that health coverage cannot be affected by genetic information, and the second that prohibits employers from exhibiting genetic discrimination. In 2017, the Government of Canada passed a similar act, the Genetic Non-Discrimination Act, which states individuals cannot be required to undergo genetic testing or disclose genetic test results for any reason, and bans discrimination based on genetic information.4 This act aims to protect individuals from the consequences of genetic discrimination and to abolish any reason that would deter someone from receiving genetic testing. There has been some political pushback to this law though, and government officials have gone so far as to argue that the act is unconstitutional, as it impedes on a province’s ability to internally regulate insurance.5 Insurance companies have also suggested that the act could raise the costs of healthcare and insurance.5 Nevertheless, legislation does need to be implemented to ensure that Canadians receive the best healthcare and testing possible, without fear of discrimination, and that individuals living with genetic abnormalities are awarded the same opportunities as any other Canadian.
“No one should have to choose between being informed about their health and suffering potential discrimination, making this law an important step forward for Canada. ”
Genetic privacy is an incredibly important topic, as it gives individuals peace of mind that their lives will not be affected should they choose to receive genetic testing. By removing this roadblock to genetic testing, all individuals have an equal opportunity to be informed about their own health without the fear of potential consequences. As genetic testing becomes more common, it enables diagnosis and treatment to occur earlier and allows families to make informed decisions about their and their loved ones’ health. No one should have to choose between being informed about their health and suffering potential discrimination, making this law an important step forward for Canada.
Works Cited:
1. Chadam C. California Boy Ordered To Transfer Schools For Carrying Cystic Fibrosis Gene, Goes Back To Class. Huffington Post. 2012. https://www.huffingtonpost.com/2012/11/08/colman-chadam-california-_n_2092816.html
2. Lewin T. Commission Sues Railroad To End Genetic Testing In Work Injury Cases. The New York Times. 2001. https://www.nytimes.com/2001/02/10/us/commission-sues-railroad-to-end-genetic-testing-in-work-injury-cases.html
3. Public Law. 2008;110-233. 2015;9(11):QD04-QD06. https://www.gpo.gov/fdsys/pkg/PLAW-110publ233/pdf/PLAW-110publ233.pdf
4. Office of the Privacy Commissioner of Canada. News release: New genetic non-discrimination law will promote privacy and human rights in Canada. https://www.priv.gc.ca/en/opc-news/news-and-announcements/2017/nr-c_170505/
5. Kondro W. Canada’s new genetic privacy law is causing huge headaches for Justin Trudeau. Science | AAAS. 2017. https://www.sciencemag.org/news/2017/03/canada-s-new-genetic-privacy-law-causing-huge-headaches-justin-trudeau
Cite This Article:
Coles V., Chan G., Lewis K., Ho J. A Look at Genetic Privacy in Canada. Illustrated by C. Qian. Rare Disease Review. November 2019.
DOI:10.13140/RG.2.2.31349.73448.
