Timeline for the development of the pan-Canadian genome core consent elements
| Phase of process (type of meeting; participants) | Dates |
|---|---|
| 1. Literature search (updated throughout guideline development) | June 2019–December 2021 |
| 2. Canada–UK Clinical Genomic Data Sharing for Research Workshop (in-person; CIHR-IG, British High Commission to Canada, UK Science and Innovation Network) | November 2019 |
| 3. Consultation with Australian Genomics regarding its consent and integration of that consent into clinical care and research (virtual; CIHR) | March 2020 |
| 4. Formal launch of the project (CIHR) | June 2020 |
| 5. Establishment of the working group and first meeting (virtual; CIHR) | August 2020 |
| 6. Establishment of the advisory group by the working group | August 2020 |
| 7. Alignment between Australian and Canadian approach (virtual; working group) | August 2020 |
| 8. Collection of existing consent forms and analysis (working group) | September–October 2020 |
| 9. Presentation of the Pan-Australian Consent to the writing group and discussion on lessons learned (virtual) | September 2020 |
| 10. Development of the draft core consent elements (writing group) | October–December 2020 |
| 11. Completion of the draft core consent elements (writing group) | January 2021 |
| 12. Revision of the core consent elements (working group) | February–March 2021 |
| 13. Canada–UK Genomic Data Sharing Workshop II (virtual; working and advisory groups) | February 2021 |
| 14. Presentation at the “Engagement Session #5 on Clinical Trial Oversight and Implementation in the Context of COVID-19” hosted by Health Canada, and input integrated into the draft core consent elements (virtual; writing group members: D.O.B., E.R., H.L.) | February 2021 |
| 15. Consultation at the CAREB annual meeting and input integrated into the draft core consent elements (virtual; writing group members: C.M., D.O.B., E.R., J.F.) | May 2021 |
| 16. Dissemination of the draft core consent elements to the advisory group and integration of written feedback received (virtual; advisory and writing groups) | May–June 2021 |
| 17. Public consultation | June 2021 |
| 18. Final consultation with the broader advisory group in which consensus was reached (virtual) | June 2021 |
| 19. Final version confirmed by the writing group and preparation for publication of the end product | December 2021 |
Note: CAREB = Canadian Association of Research Ethics Boards, CIHR = Canadian Institutes of Health Research, CIHR-IG = CIHR Institute of Genetics.