"Genetic testing can either be of great benefit to humanity, or the cause of potential
concern and discrimination", remarked Errol Mendes, a Commissioner of the Ontario
Human Rights Commission and Professor of Law at Ottawa U, during his presentation
at a policy event held in Ottawa last April. "The great danger is that the imperfect
value of genetic testing could result in some individuals' dignity and human rights
being less equal than others."
Mendes spoke at the second of a three-part annual series organized by Genome Canada
and partners, entitled "GPS: Where Genomics, Public Policy and Society Meet", on
the topic of "Revisiting Genetic Discrimination Issues in 2010: Is Canada on the
Drawing parallels between the current status of genetic testing and the early stages
of information technology, Mendes asserted the importance of addressing potential
discrimination issues sooner rather than later.
"In the early days of the Internet, everyone was focused on the power of the technology,
but very little time was spent looking at the implications – for policy, law, and
regulation," Mendes commented during a later interview. "Biotech is at exactly the
same stage where the Internet was at the very beginning. Everyone is focused on
the predictive value of genetic testing and the potential benefits, but very few
people are looking at the implications, such as the potential for insurance companies
and employers to use genetic testing as a basis to discriminate against those with
multiple genetic vulnerability."
"It will be important to have an open and honest dialogue between government, civil
society, lawyers, and human rights commissioners. You can't hold back science, and
it can provide great benefits, but we have to ensure it doesn't come at too great
a cost to our most vulnerable. We have to balance the needs of the private sector
with the need to protect human dignity."
Launched in 2009 by Genome Canada and its Core Advisory Partners (CAP), the annual
GPS series aims to broker two-way dialogue between federal policy-makers and GE3LS
researchers on various policy options for addressing issues that arise at the interface
of genomics and society. The 2nd GPS event was co-sponsored by Genome Canada, Canadian
Institutes of Health Research (CIHR) Institute of Genetics, CIHR Ethics Office and
the Canadian Human Rights Commission.
"The recent GPS event is a perfect example of knowledge brokering at work. Everybody
gains from participating", says Genevieve Dubois-Flynn, Acting Director of CIHR's
Ethics Office, "It takes true visionaries to make it happen!"
To see the full program for the April 16 event, read speakers' presentations and
view related podcasts, please visit http://www.genomecanada.ca/en/ge3ls/policy-portal/
and click on the April 16th web button.
More Background on the GPS Series:
The theme for the 2009-2010 GPS Series is "Genetic Information".
Genome Canada's Core Advisory Partners of the 2009-2010 GPS Series are: Office
of the Privacy Commissioner of Canada; CIHR Institute of Genetics; CIHR Ethics Office;
the Council of Canadian Academies; the Public Policy Forum; the Policy Research
Initiative of Canada; and Carleton University School of Public Policy and Administration.
The first event in the 2009-2010 series, held November 27, 2009, was on the topic
of "Consent, Privacy & Research Biobanks". The third event concluding this year's
series will be held June 29, 2010, on "On-line Direct-to-Consumer Genetic Testing:
The Implications of this New Business Model".