Frequently Asked Questions (FAQs)

How will the data from this study be used?

The aim of this study is to understand how genetics, environmental factors, and access to care can be used to examine and predict mental health outcomes. The data from this study will be used in ongoing and future adolescent mental health research at the University of Calgary. This is an exploratory research study, which means we are collecting data to try to better understand youth mental health.  

Why are you collecting genetic samples/DNA/saliva?

Your genetic sample will be used in a process called whole genome sequencing This means we will be looking at all of your genes or DNA. This helps us learn if certain differences in the genetic code, also called genetic variants, are related to mental health concerns.  

Will I receive my genetic results back?

The genetic analysis in this study looks at protective and risk factors that influence the development of mental health concerns.  As part of the larger Pan-GEM study that is analysing the genetic data, you can opt-in the receive pharmacogenetic findings (like the PGx-SParK study).  

During the consent process you can also indicate if you would like to receive any medically actionable findings that are uncovered as part of our analysis. This means that if we discover that you might be at risk for developing a health concern that is actionable or treatable, we will let you know. It is very unlikely that we will discover any medically actionable health findings, so you should not expect to receive any information back even if you do indicate that you would like to receive these findings.  

Why do you need my Personal Health Number (PHN)?

Calgary TYM is interested in a variety of factors that may influence the development of mental health concerns.  This includes access to health care services, diagnoses, and treatments. Health care record data helps us better understand what is happening in the adolescent’s environment as well as provide valuable information on a primary caregiver.   

How will you be keeping my data secure? Especially my PHN?

Any data connected to identifiable information (ex: name) is kept on a secure, encrypted, password-protected database managed by the University of Calgary. When your data is removed from this database for research purposes (such as analyzing the data or sharing it with research partners), it is de-identified. This means that it has no personally identifiable information, like your name or contact information, attached to it. All members of our team who are granted access to your personal data have undergone data collection, privacy, and research ethics training. 

Your health record data will be accessed through Alberta Health Services/Recovery Alberta through secure, de-identified data transfer. That means the team sharing your health data will remove all information that could be used to directly identify you, such as your name and health number, and replace it with a code. This code will be used to link your health record data with your study data. All data will be stored in a secure, password-protected and access-controlled database that will only be accessible by trained members of the research team.  

When it comes to your health record data, we work closely with the Alberta Health Services team to ensure data is transferred securely.  

How long will you hold on to my data for?

Your data will be kept in a secure, encrypted, password-protected University of Calgary database indefinitely for continued use in research.