Sound Data Management Training

h2. Data Protection

Data protection protects the rights of individuals over their personal information. In particular, The "Data Protection Act":http://www.legislation.gov.uk/ukpga/1998/29/contents covers the processing of data relating to identifiable living individuals. The core of the Data Protection Act is a set of data protection principles. These state that personal data shall be processed fairly and lawfully and shall not be processed unless the subject gave their consent except under "specific conditions":http://www.legislation.gov.uk/ukpga/1998/29/schedule/2 (for sensitive personal data such as marital status, ethnic origin or health information there are "further restrictions":http://www.legislation.gov.uk/ukpga/1998/29/schedule/3). In addition, personal data should be:

* obtained only for specified purposes, and should not be used for anything else;

* adequate, relevant and not excessive in relation to the purposes (i.e. only the data that is required);

* accurate and, where necessary, kept up to date;

* kept no longer than is necessary for the purposes;

* processed in accordance with the rights of the data subjects under the Act;

* protected from:

** unauthorised or unlawful processing

** and loss, destruction; or damage

* shall not be transferred outside the European Economic Area without similar protection being provided.

Fair and lawful processing requires that the data was not obtained by deception and is kept confidential and that the data subject was given information about who will process the data and for what purpose.

In general, data subjects have a right to access to data held about them. The onus to provide this data is on QMUL as the data controller, and, as such, QMUL should be able to find any personal data relating to identifiable living individuals which is held within the college.

However, there is a specific exemption, for research which is not targeted at particular individuals and will not cause distress or damage to a data subject, which allows data to be processed for other purposes and held indefinitely. Data subjects also have no immediate right of access for personal data where the data is processed for research purposes and the results do not identify the data subjects.

JISC "state":http://www.jisc.ac.uk/publications/generalpublications/2001/pub_dpacop_0101.aspx:

bq. Data controllers are required by the Act to process personal data only where they have a clear purpose for doing so, and then only as necessitated by that purpose. A data controller’s purpose for any personal data processing operation should thus be clearly set out in advance of the processing, and should be readily demonstrable to data subjects. 

They also note: that the majority of the Data Protection principles do apply to research data; that there should be a review to ensure compliance with Data Protection requirements; and that a mechanism should be in place for subjects to object to the processing if they believe it would cause them damage or distress. Particular care must still be taken when processing involves sensitive data.

As data protection applies to identifiable living individuals, it is generally best practice to anonymise any data relating to individuals as soon as possible, discarding any information that allows individuals to be identified. In order to comply with the Data Protection Act, a suitable consent form should be provided allowing the use of data relating to identifiable living individuals in research. Alternatively, such consent may be recorded in interviews. Within QMUL, research which involves human participants and data relating to them should be approved by the college "Research Ethics Committee":http://connect.qmul.ac.uk/research/ethicscommittee/index.html - the fast-track ethics review should be sufficient for most C4DM research.

Further information:

* QMUL Academic Registry and Council Secretariat (ARCS) information on "data protection":http://www.arcs.qmul.ac.uk/information_governance/dp/data_protection.html

* JISC "Data Protection Code of Practice for HE and FE":http://www.jisc.ac.uk/publications/generalpublications/2001/pub_dpacop_0101.aspx with specific section on "personal data in research":http://www.jisc.ac.uk/publications/generalpublications/2001/pub_dpacop_0101.aspx#research

* Canterbury Christchurch University document on "Data Protection in Research":http://www.canterbury.ac.uk/Research/Documents/DataProtection.pdf

* "EU Data Protection Directive":http://ec.europa.eu/justice/data-protection/index_en.htm

The Act:

* "Data Protection Act 1998":http://www.legislation.gov.uk/ukpga/1998/29/contents