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Research participant privacy and access to personal information

We conduct research involving humans in a large number of disciplines across most of our faculties. Consequently, our researchers (including students undertaking research training) may collect or use research data in the form of personal information about identified individuals, to advance knowledge or test theories or hypotheses in an area of scholarship.

The type of personal information which may be collected, used and stored for research purposes is varied, but is naturally dependent on the subject of the research project. We conduct behavioural or social sciences research in fields such as education, psychology, public health and management. We also conduct research in health and biomedical fields. Personal information will therefore include medical or health information about research participants (including biological or genetic information). Research data of a personal nature may be collected directly from participants (for example, by observation or by completing questionnaires, other surveys or interviews) or it may be obtained from another organisation. Where a researcher proposes to use personal information collected for another purpose, an initial approach to the potential participant is generally made by the custodian of the information.

The use of personal information generated from research involving human participants may take various forms. For instance, the identity of the individual may remain linked to the data at all times. Alternatively, the identifying information may be replaced by the use of a code, where that code is available to re-identify the individual concerned. Where any identifying information has been completely removed from the research data, then no personal information is involved.

Use of personal information about human research participants is tied to processes for obtaining ethical approval for the conduct of the research. Prior to obtaining ethical approval, a researcher must specify the particular personal information collected, describe how it will be used in the research project and explain how these processes will be explained to potential participants. To the extent possible, researchers are encouraged to obtain the informed consent of research participants prior to the collection or use of the research data.

Our Code of Conduct for Research specifies that research data is held in the faculty, school or centre in which the research was conducted. The responsibility for maintenance and retention of the data will lie with the head of the relevant school, centre or research concentration in which the research was generated. Individual researchers may hold copies of the data. Research data is held for a minimum of five years following publication. For clinical research, a period of 15 years is generally recommended.

The raw research data may be accessed by members of the research team, members of the research funding body (if appropriate), academic and administrative staff who require access to assist the researcher(s) in a supporting role, and by senior staff of the University in limited circumstances.

Raw research data involving personal information is not normally disclosed outside the University. If data is to be disclosed to a third party, prior consent for the disclosure will be obtained at the time of collection, when consent for participation in the research project is obtained, or in some limited circumstances prior to disclosure.