Basic principles

After reviewing the proposed NDSS model in 1999, Aboriginal representatives' questions about using personal health information lead to the development of principles specific to their interests. Specifically, the Aboriginal partners require:

• Consent - An Aboriginal organization with legitimate authority to represent a unique group of Aboriginal people would provide consent before any work begins in diabetes surveillance.
• Confidentiality - The province or territory would not release Aboriginal data without the Aboriginal partner's approval.
• Privacy - Aboriginal groups would have enforceable assurances that the privacy of their membership lists and that of members are protected when their information is used to identify Aboriginal people within pre-existing NDSS datasets.
• Data Storage - Aboriginal partners would specify where, how long, and under what conditions data storage occurs, if at all.
• Ownership and Control - Aboriginal groups would hold principal ownership of NDSS non-nominal, person-level data and would specify when and under what conditions others may have access to the data. Aggregate data would be released for national reporting, and access by others would be controlled by the MOU and existing NDSS policy.