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Advances in genetics promise many health benefits,
but they also give rise to concerns about possible
violations of the privacy of genetic information.
Should genetic information be treated like other
medical information, or does it have characteristics
that make it unique? Should it be protected in some
circumstances, but made available in others? The
inappropriate release or use of genetic information
can lead to genetic discrimination, which might take
the form of rejection for employment, loss of
credit, insurance, eligibility for pensions, or even
discriminatory treatment in the application of
government social policy. The unwanted sharing of
genetic information can also disrupt family
relationships. Above all, the promise of genetic
research for improved health may be jeopardized
unless privacy and discrimination issues are
addressed.
In western countries there is little legislation
dealing specifically with genetic privacy and
discrimination at this time. However, the move
toward specific legislation is growing, especially
in the U.S. The issue continues to be debated and
examined internationally.
In Canada, most provisions that deal with genetic
privacy and discrimination appear in more general
legislation - including the Canadian Charter of
Rights and Freedoms, laws governing professional
confidentiality, data protection (privacy) and human
rights laws, etc. Many of these were drafted before
genetic information became an issue. An important
overriding issue is whether genetic information is
somehow different from other medical information,
and therefore requires more protection. This issue
has not been resolved.
Objectives
To examine the adequacy of the existing mechanisms
that protect the privacy of genetic information.
Research Topics
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What are current international practices in this
area? How does Canada compare?
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Does Canada need to take additional steps to
address the issue of genetic privacy? Are
existing safeguards of medical information
adequate?
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If additional steps are needed, what would they
be?
Methodology
CBAC will establish a project steering committee to
examine existing research, undertake new research as
needed, and undertake appropriate consultations.
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