it begs the questions – do we truly understand the risk of sharing our genetic data? and is it safe in the hands of these organizations and platforms?
before canadians can truly unlock the full potential of genome testing, we need to better understand the possible privacy risks and ethical challenges surrounding biotechnology.
genetic privacy starts with you
it’s important to highlight that participating in genetic testing or signing up for a genetic data product is entirely up to you. informed consent is not a binding contract, and citizens have the right to halt the process of genetic testing through a medical institution or request their data be removed from a digital platform at any time.
if you do choose to proceed, the process comes with the understanding of some risk.
katherine linton, lawyer at tyas family law in toronto, says that users should be aware that data cannot always be protected, despite the best efforts of these platforms and institutions.
“the nature of some services (especially those grounded in online data collection) expose the user to inherent risk,” linton told healthing in an email.
“for example, a provider may not be able to safeguard against hackers, but a user sees that risk as negligible. probability dictates that hacking is unlikely, so the user knowingly takes on that risk as a cost of doing business. while some risk is inherent, unavoidable, and understood, a user should be weary of unknowingly taking on avoidable risk”
how is personal health data from genetic testing protected in canada?
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.