Privacy Priorities - page 42

In public speeches and in presentations
to Parliamentary committees, our Office
has marshalled arguments against
familial searches on legal, ethical and
operational grounds.
Similarly, the OPC has opposed proposals
that the DNA of persons be included in the
National DNA Data Bank as soon as they
have been arrested.
Taking DNA upon arrest involves the retention
of extremely sensitive personal information
of individuals who may well be law-abiding
citizens – in spite of being arrested.
Health Research
Our Office reviewed Privacy Impact
Assessments related to a Statistics Canada
longitudinal study that is exploring the
relationship between disease risk factors
and health status and identifying public
health issues.
The Canadian Health Measures Survey
involves the collection of thousands of
biological samples, including samples
of DNA.
We made several recommendations to
increase the privacy of the voluntary
participants. For example, we urged Statistics
Canada to provide the participants with
information on proposed research as it
become available to allow them to reconfirm
or withdraw their consent based on this
new information. We also recommend
that participants be provided with a clear
explanation of what happens to their samples
if consent is withdrawn.
This example highlights the need to
take privacy into consideration when
conducting even the most socially beneficial
scientific research.
What it means for you
Highlighting genetic issues as a strategic
priority for our Office has provided us with
the opportunity to build our knowledge and
adopt a forward-looking stance. This learning
experience has allowed us to identify and
begin to prepare for privacy issues of the
future that will have very significant impacts
on the lives of Canadians.
We are now in a much better position to
assess the consequences for privacy and
the implications for the fair information
principles that underpin Canadian
privacy legislation.
As well, we have developed an understanding
of the international context of legislative
initiatives to protect genetic information.
We are also engaging with academics,
government, the insurance industry and other
stakeholders, to ensure we are staying abreast
of rapidly changing developments.
All of these efforts have allowed us to provide
more informed views to Parliamentarians
and federal government policy makers. We
have been able to raise the profile of privacy
concerns in the area of genetics.
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