Privacy Priorities - page 39

between advances in genetic science and
the increasing power, and falling costs, of
information technologies.
Technological advances are also challenging
the assumption that genetic information can
be readily de-identified, allowing researchers
to use the information anonymously.
Harvard University researchers recently
demonstrated that they were able to
re-identify more than 40 percent of a sample of
anonymous volunteers taking part in a major
DNA study being conducted by the university.
What we achieved
Back in 1995, our Office published a report,
“Genetic Testing and Privacy,” that examined
the then emerging science of genetic testing.
The key challenge identified in that report
was the need to determine how society could
benefit from the potential of genetic science,
without undermining individual autonomy
and sense of self.
The advances of the years that have followed –
the sequencing of the human genome and
dramatic advances in genetic science – have
made that challenge all the more pressing.
Our work under the umbrella of our genetic
information strategic priority has put us in a
much better position to take up that challenge.
Through the establishment of a genetic
privacy working group, we have been able to
identify priorities and build internal capacity
and knowledge.
For example, in 2009, we organized a
workshop with staff members and a
number of external experts at which
we discussed four issues: biobanking;
the use of DNA for law enforcement
purposes; direct-to-consumer testing and
genetic discrimination. The workshop
significantly increased the staff’s
knowledge base and expertise to allow
us to more meaningfully participate
in and contribute to policy discussions
regarding the governance and use of genetic
information and it helped us establish
our priorities.
As well, we have established important
working relationships with centres of
expertise such as Genome Canada and
a number of academic experts that
have allowed us to draw on specialized
knowledge. We participated in a series
of events on Genomics, Public Policy
and Society, where we addressed issues
of Genetics, Consent and Biobanks;
Genetic Information and Insurance; as
well as Online Direct-to-Consumer
Genetic Testing.
All of these activities have strengthened
our ability to support and inform the work
of policy makers and Parliamentarians on
a number of issues, in particular with
respect to the use of DNA by law
enforcement agencies.
As well, we have been able to translate our
knowledge into information products for
the general public.
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