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 Responsible RDM Practices for Sensitive Data Working 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
For more information about this group, or to become a member, contact portage@carl-abrc.ca.
Members
- Lori Walker, Brock University/CAREB (co-Chair)
- Rachel Zand, University of Toronto/CAREB (co-Chair)
- Hanan Abdel-Akher, Secretariat on Responsible Conduct of Research
- Sheila Chapman, Canadian Institutes of Health Research
- Shannon Cobb, Natural Sciences and Engineering Research Council of Canada
- Aaron Franks, First Nations Information Governance Centre [observer]
- Brenda Gagné, Mount Saint Vincent University
- Alex Garnett, Simon Fraser University
- Darren Lauzon, Statistics Canada
- Mark Leggott, Research Data Canada
- Jeff Moon, Portage Director
- Scot Nickels, Inuit Tapiriit Kanatami
- Catherine Paquet, University of Ottawa
- Kara Schick-Makaroff, Faculty of Nursing, University of Alberta
- Victoria Smith, Portage
- Karen Wallace, Secretariat on Responsible Conduct of Research
- Jin Zhang, WestGrid
Ethics Applications, Data Access Agreements, and Training
Members
- Brenda Gagné, Mount Saint Vincent University (co-Chair)
- Rachel Zand, University of Toronto (co-Chair)
- Shannon Cobb, Natural Sciences and Engineering Research Council of Canada
- Chandra Kavanaugh, Human Research Ethics Authority
- Darren Lauzon, Statistics Canada
- Mark Leggott, Research Data Canada
- Catherine Paquet, Université d’Ottawa
- Kara Schick-Makaroff, University of Alberta
- Lori Walker, Brock University
- Lee Wilson, ACENET/Portage
Environmental Scan of Practices for the Management of Indigenous Data
Members
- Jeff Moon, Portage (Chair)
- Hanan Abdel-Akher, Secretariat on Responsible Conduct of Research
- Sheila Chapman, Canadian Institutes of Health Research
- Shannon Cobb, Natural Sciences and Engineering Research Council of Canada
- Melissa Dane, First Nations Information Governance Centre
- Aaron Franks, First Nations Information Governance Centre
- Mark Leggott, Research Data Canada
- Keshav Mukunda, Simon Fraser University
- Scot Nickels, Inuit Tapiriit Kanatami
- Morning Star Padilla, Dalhousie University
- Jenn Parrott, Inuvialuit Regional Corporation
- Berenica Vejvoda, University of Windsor
- Mike Wendt, Statistics Canada
SDEG Publications
Sensitive Data Toolkit for Researchers