Identifiable information is required for the linkage of data within and between data collections. In most cases the data were not obtained for research purposes and consent for the use of this data for linkage would not have been sought at the time of collection. In some cases researchers will also request identifiable information for analysis if it is essential to their research.
In both cases, the use of personal information without consent raises particular legal issues. As a researcher it is important to understand the legal framework applicable to data linkage to ensure that all legal responsibilities are met.
The data linkage process is regulated by three bodies of law:
- legislation empowering and regulating the collection, use or disclosure of information by government entities, such as public health statutes;
- the common law of duty of confidentiality; and
- privacy legislation.
In addition, data linkage units, SURE, SUFEX and researchers accessing data via the PHRN infrastructure are also bound by contract and must comply with their;
- contractual obligations relating to privacy and confidentiality.
The bodies of law that relate to your research depend on the nature of the information, whether it is identifiable at any stage of the research project and the institution, jurisdiction and data collections involved.
For further information about your legal responsibilities for your project it is recommended you seek legal advice.