Frequently Asked Questions (FAQ)

Why Study Mental Health Genomics?

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Will I Receive Genetic Results?

This study will not provide results about genetic factors related to mental health conditions.

Because we are analysing your entire genome, there is a small chance (about 3%) that we may discover an unexpected genetic finding unrelated to mental health. These are called incidental findings. Parents or guardians who are consenting on behalf of their child to participate cannot opt out of receiving medically actionable incidental findings. If you can provide consent for yourself, you can choose whether or not you would like to receive these findings through the study.  

We are also conducting a different type of genetic testing called pharmacogenomic (PGx) testing. PGx testing looks at genetic factors that affect how your body responds to certain medications. In some cases, this information can help healthcare providers choose medications that may work better or cause fewer side effects. If we find a PGx result related to a possible serious negative effect from taking a medication, we will give those results back to you no matter what. For other PGx results, you have the choice to receive these or not. 

PGx testing only examines genes related to medication response. It does not provide information about health conditions you may develop in the future. 

When Will I Receive Results?

This is to be determined. The Pan-GEM team is working as hard as possible to estimate how long it will take for actionable results to be returned to participants. However, these timelines are heavily dependent on sample shipment and processing which are not in the team’s full control. If you have any questions about your sample’s timeline/analysis or our study please contact us at pangem@ucalgary.ca   

What Happens to My sample?

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How Is My Data Stored?

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What Are the Benefits to Me?

There is no direct benefit to taking part in this study.

However, one unique aspect of Pan-GEM is that it includes pharmacogenomic (PGx) testing on your DNA sample. PGx testing looks at genetic factors that can affect how your body responds to certain medications. In some cases, this information may help healthcare providers choose medications that are more likely to work well for you or cause fewer side effects.

What If I Change My Mind About Sharing My Data?

You can tell a member of the Pan-GEM team that you would like your data to be removed from the study up to 2 weeks after sample/data collection. After this time, we may not be able to remove any data that has already been analysed or saliva samples that have been processed. All data analysis is done using de-identified data. This means all directly identifiable information, such as your name and phone number, is removed. 

You can also request to withdraw your study data from Pan-GEM associated databases.

Will Pan-GEM Provide Diagnostic Testing Results?

The Pan-GEM study is an exploratory research study looking at different genetic risk factors involved in mental health conditions in young people. Although we are doing whole genome sequencing as part of the study, we are not providing diagnostic genetic testing results back to participants, so this study is not going to help you find the answers that you are looking for about you or your child’s health. 

Because we are doing research genetic testing, we are not providing the raw genetic data back to participants either since this type of data needs to be analyzed and confirmed before it can be used in a healthcare setting and right now there is no way to access this type of analysis as part of the healthcare system.

We know this may be disappointing to hear but unfortunately this type of whole genome sequencing is not part of the Pan-GEM study.