GPS Series on Genetic Information

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Remarks at the GE3LS Series: Online Direct to Consumer Genetic Testing

June 29, 2010
Ottawa, Ontario

Address by Jennifer Stoddart
Privacy Commissioner of Canada

(Check against delivery)

It’s clear that genetic advances are going to play an ever-more important role in our lives in the future.  At the same time, this progress will raise a host of privacy challenges that we are only beginning to understand. 

The issues we have been discussing today – and indeed as part of the two previous Genome Canada workshops  - are very much about the future.  This series, “Where Genomics Public Policy and Society Meet” is aptly named.

How we use and protect the genetic information held in biobanks; how we control the use of this information; and how we ensure that individuals benefit from personalized medicine are critically important public policy challenges that will have enormous implications for decades to come.

Genetic information holds out great promise to improve health care, to enhance the quality of life and to help us better understand ourselves.  It can benefit individuals, families and our society as a whole.

However, as we all know – and as we have discussed at these workshops – genetic information can also be misused in many ways.

We could also suffer distress or embarrassment because of the inappropriate collection, use or disclosure of genetic information.  Our families may be disrupted.  Our sense of self may be undermined.

My mandate as Privacy Commissioner of Canada is to promote the protection of personal information.  Protecting genetic information will undoubtedly become an increasingly important and challenging part of that mandate.

This is why we have identified genetic privacy as one of four strategic priorities that will help guide our policy, research, public education and investigative work over the next couple of years.

These events have been invaluable to me and to my staff in helping us to better understand how genetic information can be used and misused and also to identify issues that we will have to address. 

I am pleased that our Office was able to contribute to this important and innovative initiative.

I have had the good fortune of being able to attend all of the events.  I’ve been consistently impressed with the quality and variety of speakers, the range of stakeholders attending and the draft policy briefs that helped us focus our discussions.

So, please join me in congratulating Patricia Kosseim and her colleagues at Genome Canada for organizing these very successful events and for providing us with the much-needed opportunity to think about, and to discuss the future we want to create.

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