The field of genetic testing and precision medicine is rapidly expanding. In 2003, when scientists completed the mapping of the human genome, there were some 100 genetic tests available for genetic mutations associated with particular diseases or conditions. By 2013, when Senator Cowan first spoke about this issue in the Senate, that number had jumped to 2,000. Today, just three years later, there are over 33,660 genetic tests for some 10,000 conditions, and the number of tests keeps growing daily.
Unfortunately, our laws in Canada have not kept pace with science. In Canada, unlike most other Western nations, if one has a genetic test, there is no law, either at the federal or provincial level, that provides protection against a third party demanding access to genetic test results and then using those results, often to one’s detriment. That is what is called genetic discrimination.
Canadians have encountered problems in employment, insurance as well as having been denied custody or access to children in divorce cases— and have even been denied the opportunity to adopt a child because of their genetic test results.
Fear of genetic discrimination is causing many Canadians to reluctantly decide to not proceed with genetic testing that their doctors believe would help with their health care. Perhaps even more importantly, it is forcing parents to decide between potential discrimination and access to the best medical care for their children. That is a decision no parent should have to make.
To ensure the best possible health outcomes for Canadians, Bill S-201 creates a new Genetic Non-Discrimination Act that would prohibit service providers from demanding genetic testing or requiring that a person disclose the results of past genetic testing. It also provides for a complaint procedure for federal employees facing disciplinary action because of results from genetic testing. Lastly, it adds “genetic characteristics” as a prohibited ground of discrimination under the Canadian Human Rights Act.
Read the bill on LegisInfo here.
© 2019 Rob Oliphant. All rights reserved.