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HostSeq Data Access Compliance Office (DACO)

The Data Access Compliance Office (DACO) handles requests from scientists for access to controlled data from HostSeq (see controlled access data types here).

The DACO is located at the Centre of Genomics and Policy at McGill University. It is led by Ma’n H. Zawati, Assistant Professor and Executive Director, Centre of Genomics and Policy, McGill University.

TO SUBMIT AN APPLICATION FOR DATA ACCESS, CLICK HERE

FOR A LIST OF ALL CURRENT DACO APPROVED PROJECTS, PLEASE CLICK HERE.

OVERVIEW

Data from the CGEn HostSeq Databank will be made available through open (aggregate) and controlled-access tiers, based on the type of data, its sensitivity and the specifications of the contributing collection.

Further information about the Databank Governance Framework can be found here.

1. AIM
   The goal of the HostSeq Databank (‘HostSeq’) is to create: a unique, collaborative research infrastructure with the mission to conduct the whole genome sequencing (“WGS”) of 10,000 human genomes of Canadian affected by COVID-19, using Biological Samples provided by research participants; and, enable data sharing on COVID-19 and other health outcomes.
   
   
2. GENERAL
   Data access and release under the controlled access tiers will be overseen by the HostSeq Independent Data Access Compliance Office (DACO). The role of the DACO is to coordinate access requests for projects proposing to use controlled-access data. The Data Access Committee is an independent body that assesses feasibility of the proposal, reviews and approves, conditionally approves or denies the request, according to criteria set here.
   
   For the purposes of health-related research on COVID-19 and other health outcomes, the CGEn HostSeq Databank allows free-of-charge access for academic research to the dataset of whole genome sequences and associated clinical data generated for the HostSeq Project, for the purposes of health-related research on COVID-19 and other health outcomes. 
   
   *The HostSeq Databank Rules and Policies will be amended and updated from time to time.
   
   
3. DATA ACCESS
   Qualified researchers may apply to become a user of the HostSeq Databank by applying for data access through the HostSeq DACO, as described on the Application Process page. Applicants should make sure to provide all of the information requested in the application form. Partnered-researchers, that is, researchers who have contributed data to HostSeq can undergo an expedited controlled-access review.
   
   Once personal login information is provided, individuals are to continuously update their profile in the case of any changes relating to employment, or positions. If there are any changes in research projects or experimental designs, the DACO needs to be contacted immediately.
   
   HostSeq Databank users shall share results in accordance with applicable policies outlined in the HostSeq Publication & Acknowledgment Policy.
   
   The User may terminate his or her HostSeq Databank usage by written notice of resignation to the DACO.
   
   
4. COMPOSITION
   The Data Access Committee is composed of independent members who are not related to CGEn or its day-to-day activities and will include 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)
   Director, Privacy and Access, PHSA Research and New Initiatives
   Provincial Health Services Authority
   Simon Fraser University

   David Buckeridge
   Senior Scientist, RI-MUHC
   Metabolic Disorders and Complications Program
   Centre for Outcomes Research and Evaluation
   Professor, Department of Epidemiology and Biostatistics,
   Faculty of Medicine and Health Sciences, McGill University, 
   Department of Medicine, Division of Clinical Epidemiology, MUHC

   Jessica Denis
   Investigator, BC Children’s Hospital 
   Assistant Professor, Faculty of Medicine, Department of Medical Genetics
   The University of British Columbia 

   Chris McMaster
   Christopher R. McMaster, PhD, FCAHS
   Scientific Director / Directeur Scientifique
   CIHR Institute of Genetics / IRSC Institut de Génétique
   Government of Canada / Gouvernement du Canada
   and, Professor of Pharmacology, Dalhousie University
   
   Larry Worfolk
   Patient/ Participant Representative

   Mark Gillrie
   Assistant Professor, Department of Microbiology, 
   Immunology and Infectious Diseases, 
   Calvin Joan Snyder Institute, University of Calgary

   Meredith McLaren (observer)
   Director, Programs & Partnerships, CGEn

5. CONTROLLED ACCESS
   All data access to HostSeq controlled data shall be related to the approved research project(s), to ensure compatibility with the objectives of the HostSeq Databank. Any project must be approved before the data is accessed. HostSeq Databank users shall use their access solely for the purpose of the research in which they participate, and for which they have been approved by the DACO.
   
   
6. PUBLICATION POLICY
   CGEn HostSeq Databank users must comply with the HostSeq Publication & Acknowledgment Policy. Authorship and co-authorship of any publication or output should be defined in accordance with the guidelines issued by the International Committee of Medical Journal Editors (ICMJE) and as outlined in the HostSeq Publication Policy.

TO SUBMIT AN APPLICATION FOR DATA ACCESS, CLICK HERE