Ethical guidelines for research data

Some of the primary ethical guidelines relating to research data in Canada and beyond:

Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans – TCPS 2
There are implications for data management across the entire Statement, but in particular see Chapters 3, 5, and 9. The Statement and associated policies are managed by the Tri-Agencies Panel on Research Ethics.  

Tri-Agency Framework: Responsible Conduct of Research
Policies and requirements, from applying for funds to responding to allegations of a breach. 

First Nations Principles of OCAP®
The First Nations Information Governance Centre provides a set of standards that establish how First Nations data should be collected, protected, used, or shared. The OCAP® principles have existed since 1998, and refer to the Ownership, Control, Access, and Possession of First Nations data. 

CARE Principles for Indigenous Data Governance
Drafted by the Global Indigenous Data Alliance, these principles advance Indigenous self-determination in relation to data management and sharing by addressing Collective benefit, Authority to control, Responsibility, and Ethics.  

Getting support with research data ethics 

Legal constraints, human subjects, populations at risk

There could be legal constraints preventing you from sharing your data, if for example your data contains trade secrets or commercial information. If your research involves human subjects or other populations at risk (e.g., endangered species), you need to ensure their confidentiality. 

Working with sensitive data

In general, you will need to take extra care to manage de-identification or anonymization of sensitive data. In most cases it is not sufficient to simply remove directly identifying information from a dataset, as it is possible to re-identify subjects using combinations of indirect identifiers.

To help researchers who are dealing with sensitive data, the Portage Network Sensitive Data Expert Group has put together the Sensitive Data Toolkit for Researchers. The toolkit covers a glossary of terms for sensitive data, a risk matrix for research involving human participants, and a guide to assist researchers with developing tailored language for ethics approval and informed consent:

• Part 1: Glossary of Terms for Sensitive Data used for Research Purposes
• Part 2: Human Participant Research Data Risk Matrix
• Part 3: Research Data Management Language for Informed Consent

Guidance and recommendations

For more details and guidance for specific contexts see:

• Health Canada has a draft guidance document for the Public Release of Clinical Information
• The Information and Privacy Commissioner of Ontario has De-identification Guidelines for Structured Data
• The UK Data Service has recommendations for anonymizing personal information contained in research data.

Additional resources

Obligations when sharing data - UK Data Service
Additional information about the multiple ethical and legal obligations that need to be considered when sharing research data.

DMP Assistant Tool - Portage Network
This tool provides guided support with ethical questions relating to research data management in a Canadian context.