What is CARTaGENE's genealogical option?

Participants in the CARTaGENE Project may also choose to participate in its genealogical option. Participation is not compulsory. When they meet with the project's nurse or interviewer, participants are provided with documentation to review at home that describes the option. Participation involves:

1. Signing a consent form specifically for the genealogical option;
2. Completing a genealogical questionnaire by providing the family and given names and places and dates of birth, marriage and death of the participant, parents, grandparents, etc.;
3. Mailing the signed consent form and completed questionnaire in the postage-paid pre-addressed envelope to the BALSAC Project at the Université du Québec à Chicoutimi.

What is the BALSAC Register?

The BALSAC Register is a computerized database located at Université du Québec à Chicoutimi (UQAC).

It was developed in partnership with Université Laval, Université de Montréal and McGill University.

Data in the BALSAC Register is drawn from public acts of civil status of Quebec (principally acts of marriage).

Among its advantages is the ability to quickly produce genealogies in Quebec by tracing ancestors back to the early 17th century.

The BALSAC Register contains no medical or genomic data.

What is the BALSAC Project's role in CARTaGENE?

The BALSAC Project is responsible for CARTaGENE's genealogical option.

It collects genealogical questionnaires from participants and stores them securely for the duration of the CARTaGENE Project.

When a researcher using the CARTaGENE research database needs to analyze the genealogy of a group of participants for a specific study, CARTaGENE requests access to the BALSAC Register on their behalf to the Université du Québec à Chicoutimi (UQAC). Once the request is approved, the BALSAC Project team will reconstruct the participants' family trees from their responses in the genealogical questionnaire and the data already present in the BALSAC Register.

How is the BALSAC Register useful to CARTaGENE?

CARTaGENE is the only large-scale genome project that has a register like BALSAC available to it.

Genealogies produced from the BALSAC Register allow researchers to determine how participants are related to one another, identify common ancestors and their place of origin, etc.

This information is useful for understanding the demographic and historical factors that shaped Quebec's genetic makeup. It also aids our understanding of the distribution of genes or certain diseases in the population.

What does participation in the genealogical option entail?

Participants who express an interest during their meeting with the nurse or interviewer are provided with documentation on the genealogical option and a questionnaire to take home.

Participation in CARTaGENE's genealogical option involves:

1. Signing a consent form specifically for the genealogical option;
2. Completing a genealogical questionnaire by providing the family and given names and the places and dates of birth, marriage and death for the participant, their parents, grandparents, etc.;
3. Mailing the signed consent form and completed questionnaire in the postage-paid pre-addressed envelope to the BALSAC Project at the Université du Québec à Chicoutimi.

Neither CARTaGENE nor BALSAC will provide participants with their genealogy.

 

 

Does participation in CARTaGENE necessarily entail participation in the genealogical option?

No. Participation is voluntary. CARTaGENE participants are free to choose whether to fill in and return their consent form and genealogical questionnaire.

Is personal information protected by the BALSAC Project?

Yes, the BALSAC Project protects personal information.

Since 1976, the BALSAC Project has been subject to rules designed to protect personal information.

As a result, it has implemented a set of physical and computer security measures.

Users of BALSAC data must sign a contract stating that they will keep it secure.

Who has access to the BALSAC Register?

The BALSAC Register can only be used for scientific research. It is therefore not available to the public, employers, insurance companies, lending institutions, etc.

Before obtaining access to BALSAC Register data, researchers must demonstrate that their project corresponds to stringent ethical standards.

Consequently, the procedure to request access to BALSAC data includes evaluation by recognized research ethics committees. 

How will researchers have access to BALSAC genealogical data through CARTaGENE?

Once the researcher has demonstrated that its research project is up to ethical standards and has agreed to conform to the BALSAC Register Policy on Privacy, Data Protection and Research Ethics, BALSAC Project staff will then reconstruct the requested genealogies. 

Reconstruction uses the information participants provide in the genealogical questionnaires and data already in the BALSAC Register.

The BALSAC Project then transmits coded data in which names have been replaced by numbers to the researcher. The results of the analysis are completely anonymous.