HostSeq Data Access Information

General information regarding HostSeq data access is provided below. Further details can be found in the Databank Governance Framework and the HostSeq Data Sharing Policy and Procedures.

The HostSeq Data Access Compliance Office (DACO) coordinates access requests for projects proposing to use controlled-access data from the HostSeq Databank. The DACO is located at the Centre of Genomics and Policy (CGP) and is led by Ma’n H. Zawati, Assistant Professor and Executive Director, CGP, McGill University. The HostSeq Data Access Committee (see composition below) is an independent body that assesses the proposal, reviews and approves, conditionally approves or denies the request, according to set criteria (see Step 2 below).

Qualified researchers may apply to become a user of the HostSeq Databank by applying for access through the HostSeq DACO, as described below:

STEP 1: To request access to the controlled-access dataset through the DACO, the Principal Investigator (PI) must submit a completed Electronic Application Form.

A new Application Form must be submitted for each new study. As part of the application, the PI must list all research team members who require access to the data (ex: researchers, employees, laboratory personnel, etc.).

Contributing Study PIs who have provided samples and data for the HostSeq Databank must apply for access to controlled-access data from collections other than their own. A project-specific Application Form needs to be submitted to the HostSeq DACO for Expedited Review by the DACO Chair. As part of their review, the DACO Chair may call upon additional advice from members of the DACO, where needed.

STEP 2: As part of its review, the DACO will consider the following information:

• Compatibility of the proposal with the objectives of the HostSeq Databank;
• Description of the dataset requested and availability within the HostSeq Databank;
• Justification that the project requires access to HostSeq datasets;
• Qualifications of the PI to undertake the proposed project;
• Number and names of research team members that will have access to data and rationale for their access;
• Feasibility of the proposed project;
• Proof of local ethics committee approval for the proposed project (or justification as to why such approval is not required).

STEP 3: Upon approval by the DACO, a Data Access Agreement is entered into between the PI’s institution and CGEn’s lead institution (SickKids). Controlled access to HostSeq Databank is granted for a period of 1 year (which may be renewed).

STEP 4: Once an agreement is signed, the PI or research team designate will be provided with instructions on how to create an account to access individual-level genomic and health data from the HostSeq Databank.

All access to HostSeq Databank controlled-access data shall be related to the approved research project(s), to ensure compatibility with the objectives of HostSeq. All project(s) must be approved before the data is accessed, and HostSeq Databank users shall use their access solely for the purpose of the research project in which they participate, and for which they have been approved by the DACO.

Individuals are to continuously update their profile with the DACO in the case of any changes relating to employment or positions. If there are any changes in research projects, experimental designs, or research team composition, the DACO needs to be contacted immediately.

The PI may terminate their HostSeq Databank usage at any time by written notice of resignation to the DACO. All projects will receive a Renewal/Completion Form from the DACO prior to the expiry of the 1-year term of their Data Access Agreement.

HostSeq Databank users shall share results in accordance with applicable policies outlined in the HostSeq Publication & Acknowledgment Policy.

The Data Access Committee is composed of independent members who are not related to CGEn or its day-to-day activities and includes experts in Information Technology; the legal/ethical aspects of genomic research, data sharing, privacy and data protection; patient interest; and bioinformatics. Current HostSeq DACO members are:

Holly Longstaff (Chair)
Adjunct Professor, Simon Fraser University, Faculty of Sciences
Director of Research Integration and Innovation, Provincial Health Services Authority BC
Research Ethics Board, UBC/BC Children and Women’s

Jessica Dennis
Assistant Professor, UBC, Department of Medical Genetics
Investigator, BC Children’s Hospital Research Institute (BCCHR)

Mark Gillrie
Assistant Professor, University of Calgary, Department of Medicine, Department of Microbiology, Immunology and Infectious Diseases, Calvin Joan Snyder Institute
Lab Principal Investigator, Gillrie Lab
Infectious Diseases Clinical Specialist, Department of Medicine, Foothills Hospital, Calgary

Meredith McLaren (observer)
Chief Executive Officer, CGEn