Quebec’s Genetic Map – CARTaGENE

Quebec’s Genetic Map – CARTaGENE

by Dr. Hsien-Hsien Lei
Posted May 23, 2007 in DNA in General

How similar do you think you are to the average person in Quebec? Assuming you’re not from Quebec originally1, of course. Would you think results from a DNA study of Quebec residents applied to you?

The reason I ask is because Quebec will soon have a databank and biobank containing information and samples from around 20,000 randomly selected people in the Canadian province aged 40-69 years based on records kept by the provincial health insurance board. Funded by both the federal and Quebec governments, the CARTaGENE project will collect environmental, demographic, and health data in addition to blood and urine samples. The government has invested $34.5 million and international partners are expected to contribute to a total budget of $64.5 million. Researchers hope the project will become a coordinating center for international genetic epidemiologic studies with the goal of using genetic information to improve diagnostic criteria, medical treatment, and disease prevention for both Canadians and other people from around the world.

As I commented today over at VentureBeat Life Sciences with respect to 23andMe, one of the main concerns for participants has got to be about privacy and confidentiality. Charlie Fidelman of The Montreal Gazette picked up on this concern in his article: Security to be tight on data collected from DNA donors. CARTaGENE’s scientific director, Claude Laberge, says that DNA information will be “double coded” and participants will have full ownership over the samples, which will be stored for 50 years2. As for the data and results gleaned from the samples, no one but researchers will have access to it, not even the DNA donors. Employers, insurance companies, government agencies, etc. are all to be locked out.

cartagene processCARTaGENE has a flow chart that tells participants what to expect if they decide join the study. (Click on the image for a larger view.) There’s also the option of contributing to health-related research as well as genealogy studies.

If you were asked by your local government to donate your DNA sample for research, would you do it?

1On the other hand, what does it mean to be from someplace originally? Perhaps a debate for another day.

2I can’t help but think 50 years is a really really long time. Why not extract the DNA and toss the blood samples? Probably because they’re hoping to assay biomarkers and other proteins in the blood at a future date.

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Comment by Chris Subscribed to comments via email

The NIH is doing something similar in conjunction with the famous Framingham Heart Study. They may have up to four generations of data in some families, which should provide some interesting data.

Comment by Hsien

Hi Chris! Thanks for the comment. :) Most longitudinal studies now incorporate a DNA banking component. Another study similar to Framingham that is also collecting DNA samples from study participants is the Atherosclerosis Risk in Communities study (ARIC).


[...] As an epidemiologst, I’m particularly interested in the population association studies which means that many study participants need to be recruited to give a sample of their DNA, submit to a lifestyle survey, and commit to follow-ups. The UK Biobank and CARTaGEne in Quebec, Canada are two such examples (please see previous Eye on DNA post). [...]

Comment by Becca C

My biggest concern with this sort of thing, which was somewhat addressed in the article, would definitely be privacy. Is there any guarantee that only researchers will see the data?


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