Genetic sequencing gets personal: Who owns your DNA? (Public Forum)

What

Public Forum

When

May 16, 2017

Where

6pm - 8pm,
Martin Amphitheatre

McIntyre Building, 6th floor
3655 Promenade Sir William Osler
Montreal, QC, Canada
H3G 1Y6

Update: Thanks to all who attended this forum! Videos of the presentations and the question/answer session will be posted shortly - check back soon!

Genetic sequencing gets personal: Who owns your DNA?

Your DNA is an awesome source of information - you can trace your heritage, determine your risks of disease, and even use it to personalize treatments. With new technologies available in the clinic and at home through kits from companies like BiogeniQ, 23andMe, and even Ancestry.com, it is almost certain that your DNA will get sequenced.

But who owns your genetic information? Will insurance companies or research groups have access to your genetic information? What is a genetic counselor, and do you need one?

This public forum intends to answer these questions and many more. Join us for a two-hour session on Tuesday May 16th to learn more about personal DNA sequencing and how Canadian scientists, senators, and policymakers are making sure your data stays safe.

To register for this public forum, click here. Registration is free, but seating is limited - so register quickly!


Psst...did you know this public forum is the first of a two-part series? To get more information or register for our gene editing forum on June 6th, click here!


Event details

When: 6-8pm on Tuesday May 16th, 2017

Location: Martin Amphitheatre (6th floor), McIntyre Building, 3655 Promenade Sir William Osler, Montreal, QC, Canada

Format:

(2 min) James Cowan, a now retired senator who sponsored and recently passed the genetic anti-discrimination bill S201, briefly welcomes everyone to the session;

(20 min) Nathalie Bolduc, genetic counsellor with BiogeniQ, describes what you can learn from personal genetics testing for heritage or disease, and reasons why you should do it;

(25 min) Adrian Thorogood, associate at McGill's Centre for Genomics and Policy, will introduce DNA sequencing and how these technologies impact treatment, and will discuss how DNA data is regulated, who owns it, and how can it be used, for better or for worse.

(15 min) James Cowan discusses the importance of bill S-201, and what are some next steps in the fight against genetic discrimination.

(15 min) Break for coffee where we will collect cue cards with your questions for our panelists

(45 min) Senator Cowan will pose your questions to the panel for discussion

Please see the "Speakers" tab above for more information about our speakers.




James Cowan:

Senator Cowan was appointed to the Senate on March 24, 2005, and sat in the Senate as a member of the Liberal Party of Canada. He was named Opposition Whip in the Senate on January 18, 2007 and was appointed Leader of the Opposition in the Senate on November 3, 2008. In June, 2014, the Senate Liberal Caucus reaffirmed Senator Cowan’s leadership through internal elections, a position he held until stepping down on June 22, 2016. Senator Cowan retired from the Senate in January 2017.

Senator Cowan’s Bill S-201 to prohibit and prevent genetic discrimination passed the Senate in April 2016 and the House of Commons in March 2017. It is now awaiting Royal Assent. In the previous Parliament, he also proposed legislation to address the criminal justice system’s approach to persons suffering from mental illness. Senator Cowan was also a member of the Special Joint House-Senate Committee on Physician-Assisted Dying.

Senator Cowan is the recipient of the 2016 Advocacy Award by the American Society of Human Genetics for his work leading efforts to prevent genetic discrimination in Canada. He shares this award with the Canadian Coalition for Genetic Fairness.

Nathalie Bolduc:

Nathalie Bolduc is currently the Director of Clinical Genetics for BiogeniQ. She was the president of the Quebec Association of Genetic Counsellors from 2007 to 2013 and is the current President of the Canadian Association of Genetic Counsellors.

Adrian Thorogood:

Adrian (B.A./Sc, B.C.L./LL.B.) is a lawyer and Academic Associate at the Centre of Genomics and Policy, where his research focuses on health care professional responsibility in genetics, the privacy of health information, and the promotion of data sharing in genomic research.

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