What happens to my sample and my data? 

The Pan-GEM study is using your health and genetic data to better understand the causes of mental health conditions in young people.

We will be looking for:

• factors that increase or decrease someone’s chances of developing a mental health condition

• improvements to how people are diagnosed with a mental health condition

• improvements for medication treatment options for people with mental health conditions.

In the Pan-GEM Study, your genetic and health data are linked together, and can only be accessed by approved members of the Pan-GEM study team. Information that can identify who you are, like your name, date of birth, health number are not stored with the rest of the study data and are not part of the analysis.

When we do genetic testing, we look at the spelling of someone’s DNA to try and figure out if the letters are different than what we would expect to see. This means we need to have a lot of information about what letters are usually seen at a specific point in a gene, then if we find something different we can figure out if this difference could cause a health problem or if it just regular variation between people.

The Pan-Canadian Genome Library is putting together a collection of genetic data to represent all of the diversity in Canada.

Your genetic data and a very small amount of your health data is shared with the Pan-Canadian Genome Library. We will remove any infomation that could directly identify you, like your name, contact information, or date of birth.

In the future, other researchers can request to use data from the Pan-Canadian Genome Library, these requests go through a strict review and approval process to make sure your data is being used appropriately and ethically.

If you identify as Indigenous, you have extra options about sharing your genetic data with the Pan-Canadian Genome Library.

Other researchers may request access to your data from the Pan-GEM study. These requests would go through a strict review and approval process to make sure your data is being used appropriately and ethically.

If their request is approved, we would only share de-identifed data, which would not include anything that could be used to directly identify who you are.

If you identify as Indigenous, you have extra options about sharing your genetic data with other researchers.