Revisiting Genetic Discrimination Issues in 2010: Policy Options for Canada
GPS Policy Brief No. 2
13 Pages Posted: 14 Dec 2010
Date Written: June 15, 2010
Since the advent of the Human Genome Project, concerns have been raised about the potential inappropriate collection, storage and use of genetic information, particularly in the insurance and employment sectors. As genetic testing technologies become more readily available and affordable, their predictive capacity more accurate, marketing strategies more sophisticated, and access to online genetic information more pervasive, the incentives for third parties to mine and exploit this information will increase. The Council of Europe’s Convention on Human Rights and Biomedicine, which explicitly prohibits genetic discrimination, prompted legislative initiatives in many countries. The U.S. has responded with state legislation and, federally, with the much-heralded but controversial Genetic Information Non-Discrimination Act (GINA) of 2008. GINA has created more recent pressure for a legislative response in Canada and has inspired the introduction of a federal private member’s bill on genetic discrimination in 2010. Given recent developments, it may be time for Canada to revisit this policy issue. This Policy Brief explores three possible options (other than status quo) for addressing potential issues of genetic discrimination: 1) strengthened use of existing human rights and privacy regimes; 2) a new regulatory framework for genetic testing; and 3) sector-specific solutions for insurance.
Keywords: Human Genome Project, genetic discrimination, GINA, genetic information, discrimination, equality, human rights, genetic testing, regulation of technology, insurance, employment
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