Companies such as AncestryDNA and 23andMe have made genetic testing more accessible and popular with consumers over the past decade. Genetic testing can not only reveal a person’s genealogy and ethnic background but also reveal and identify a person’s genetic disposition for a certain illness or disease.
Today it is common for a person to send a sample of their saliva by mail in a DNA test kit provided by one of these companies. The question that arises is how well this genetic information is protected by those companies and what happens to it after someone dies? In some cases a person can designate a beneficiary to take ownership of their DNA profile with that company. Failing this a person’s DNA may become the property of that company on their death.
Forensic scientists have been using DNA testing to identify criminals for years and some of the early applications included fingerprinting and hair analysis. Considering that these practices are still commonly used in today’s investigative work, is it possible for police and government entities to now obtain genetic information provided by consumers without their consent during an investigation? Is the onus on the company to maintain private records or on the consumer who is voluntarily providing a sample of their DNA? Many of these companies have measures in place to prevent police from accessing this information but some privacy agreements may be inconsistent with consumers’ expectations and people should be wary of providing DNA samples if they have privacy concerns.
Will a time come when a person may be compelled to hand over their genetic information to an insurance company, for example, in order to qualify for life insurance?
Section 3 of the Genetic Non-Discrimination Act in Canada states that:
3 (1) It is prohibited for any person to require an individual to undergo a genetic test as a condition of
(a) providing goods or services to that individual;
(b) entering into or continuing a contract or agreement with that individual; or
(c) offering or continuing specific terms or conditions in a contract or agreement with that individual.
As it stands, Canadians are protected against genetic discrimination under this Act however it will be interesting to see if and how these laws change over time as genetic testing continues to become more conventional for a variety of different applications.
Deborah A. Todd