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Data protection, rights and access: Clinical considerations and privacy

What if my research involves NHS patients?

You can find out more about the specific issues affecting GCU researchers in our Ethics section. See the recommended resources page for this unit for further information about privacy, confidentiality and consent in the UK clinical research environment.

Privacy and consent

What is privacy?

The ‘right to privacy’ generally refers to the state of being free from intrusion or disturbance in one's private life or affairs.

The research proposal should outline strategies to protect subjects' privacy, including how the investigator will access information from or about participants. Privacy and confidentiality are related but are not the same thing. Privacy relates to the individual or subject, whereas confidentiality relates to the actions of the researcher.

There are many different ways of obtaining consent from your research subjects. The form of consent affects not only how you conduct your research but who can have access to any personal data you hold. Personal data must not be disclosed unless specific consent has been given: this is called informed consent.

It is worth considering who needs to access the personal data and what needs to be done to the data in order for it to be shared publicly or with other researchers when deciding on the form of consent you will use. Anonymised data does not require consent, but it is considered ethical to inform your subjects about what will become of the data.

There are examples and guidance on writing informed consent forms from the UK Data Archive and the NHS National Research Ethics Service on the recommended resources page for this unit.

Writing a data management plan by Edina, University of Edinburgh, modified by Glasgow Caledonian University is licensed under a Creative Commons Attribution 3.0 Unported License. Based on a work at http://datalib.edina.ac.uk/mantra/introduction.html

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PILOT by Imperial College London, modified by Marion Kelt, Glasgow Caledonian University is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.