Privacy Priorities - page 40

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Here are some examples of our work:
Genetic Testing
A 2010 study funded by our Office surveyed
the privacy policies of companies which
offer a wide range of genetic tests directly
to consumers.
The study also provides Canadians with a
three-page checklist of privacy questions
to ask before signing up with a direct-to-
consumer testing company.
Consumers who seek answers to the
questions – through careful review of
company privacy policies and direct contact
with companies – will be able to make a
more informed choice about sending their
personal information and genetic samples to
a company.
Our Office partnered with Genome
Canada to organize a workshop series to
foster a dialogue between policy makers
and researchers on three issues: direct-to-
consumer testing, genetic discrimination and
the role of consent in biobank research. The
workshops produced policy briefs designed
to inform debate and discussion on these
three issues.
Genetics and Insurance
Another rapidly evolving area of genetic
privacy involves the potential use of genetic
information by insurance companies.
Unlike in other countries such as the
United States, there are no laws in Canada
that specifically address the use of genetic
information by insurance companies.
Nor has any government here imposed a
moratorium on the use of genetic information
for insurance purposes, as in some
European countries.
The Canadian Life and Health Insurance
Association has adopted the position
that although insurers would not require
insurance applicants to undergo genetic
testing, an insurer may request access to
the results if an applicant has undergone
genetic testing.
To help us better understand the industry and
assess the Association’s position, our Office
commissioned two academic experts
to look at the industry’s argument that
insurers need to have access to any available
genetic information in order to accurately and
fairly assess risks.
Their studies concluded that, at present and
in the near future, a ban on the use of genetic
information by the life and health insurance
industry would not have a significant impact
on insurers or on the efficient operation of
insurance markets.
As a follow-up, we organized a roundtable
discussion with various stakeholders.
The roundtable discussion, along with the
research we commissioned, will help us
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