Sensitive Data Expert Group

The collection, analysis, use, and reuse of research data takes place in a complex legal, policy, and societal context involving privacy, intellectual property rights, commercial concerns, working with Indigenous communities and data, and other key ethical issues. The Sensitive Data Expert Group is composed of a broad membership from research communities – including research ethics professionals, representatives of funding agencies, and members of Indigenous organizations – with direct interests in this subject. The group works together to develop practical guidance and tools for the management of sensitive research data in the Canadian landscape. This work helps Portage and other organizations develop both practical and policy responses to the RDM needs of Canadian researchers and contributes to the expertise of the broader RDM community of practice in Canada.

Current areas of interest include

Developing materials to assist researchers in understanding the impacts of research ethics on research data management, including a glossary of terminology, a risk matrix, and examples of deposit-friendly language for consent forms.
Supporting the development of DMP templates for use in research contexts related to Indigenous peoples and communities.

Terms of Reference for the Sensitive Data Expert Group

To become a member, please complete the Portage Expression of Interest Form.

Members

Lori Walker, Brock University/CAREB (co-Chair)
Rachel Zand, University of Toronto/CAREB (co-Chair)
Sheila Chapman, Canadian Institutes of Health Research
Shannon Cobb, Natural Sciences and Engineering Research Council of Canada
Philipe Després, Université Laval/CHU de Québec
Aaron Franks, First Nations Information Governance Centre [observer]
Brenda Gagné, Mount Saint Vincent University
Alex Garnett, Simon Fraser University
Jeremy Geelen, Canadian Institutes of Health Research
Darren Lauzon, Statistics Canada
Mark Leggott, Research Data Canada
Suzanne McMurphy, University of Windsor
Jeff Moon, Portage Director
Scot Nickels, Inuit Tapiriit Kanatami
Bobby Nikkhah, University of British Columbia
Catherine Paquet, University of Ottawa
Victoria Smith, Portage
Kristi Thompson, University of Western Ontario
Berenica Vejvoda, University of Windsor
Karen Wallace, Secretariat on Responsible Conduct of Research
Jin Zhang, WestGrid

SDEG Publications

Sensitive Data Toolkit for Researchers Part 1: Glossary of Terms for Sensitive Data used for Research Purposes. September 2020 PDF
Sensitive Data Toolkit for Researchers Part 2: Human Participant Research Data Risk Matrix. September 2020 PDF
Sensitive Data Toolkit for Researchers Part 3: Research Data Management Language for Informed Consent. September 2020 PDF