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there are also a number of genetic data products like 23andme that have operations in jurisdictions outside of canada, and a wider array of mobile applications and websites around the world that allow for the sharing of personal medical information.
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in canada, the protection of personal information and data security is primarily governed by the personal information protection and electronic documents act (pipeda) . pipeda sets out regulations and guidelines for how organizations handle personal information for the sake of commercial activity, including dna and health data.
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“organizations that are subject to pipeda must follow ground rules for the collection, use and disclosure of personal information,” the office of the privacy commissioner of canada (opc) confirmed to healthing in an email.
“the purposes for which the personal information is being collected must be identified by the organization before or at the time of collection, and the information collected must be limited to that which is needed for the purposes identified by the organization.”
the opc oversees compliance of pipeda and leads the charge in working to ensure that organizations are adhering to all data protection laws and addressing privacy concerns.
furthermore, the government has identified the institutions that collect health data in canada and outlined the legislation that applies to them – either pipeda or the privacy act . this covers public health agencies, private institutions, publicly-funded hospitals and schools, employers, insurance companies, health-related associations or professional organizations and others.
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the genetic non-discrimination act , passed in canada in may 2017, is a critical piece of legislation designed to protect canadians who undergo genome testing and genetic analysis. under this act, genetic discrimination is prohibited in various aspects of life, including employment and access to goods and services. it ensures that individuals who choose to undergo genome testing will not face discrimination based on their genetic information.
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the regulations are wide reaching and canada is engaged in a number of agreements with international jurisdictions to ensure the protection of health information – including australia, brazil, china, members of the european union, hong kong, israel, japan, republic of korea, mexico, singapore, the united states and the world health organization.
data breaches that target genetic information can have serious consequences for individuals and their families. users of 23andme were the target of a major data breach in october 2023, impacting millions of accounts. instead of hacking the company’s servers, hackers targeted individual user accounts, particularly those with weak or repeated passwords.
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in this example, the mother now knows she has an elevated risk of developing these specific cancers. but her test results also have implications for her children, particularly her daughters. this is because her brca1 mutation has a 50 per cent chance of being passed on to each of her biological children. the mother now must decide whether or not to share her test results with her family members.
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