Collecting, using and sharing data in research with people requires taking into consideration the legal landscape and expected ethical standards for research.
Duty of confidentiality
In the UK there is a ‘duty of confidentiality’ that is based in common law and that occurs where confidential information comes to the knowledge of a person in circumstances where it would be unfair if it were then to be disclosed to others.
It applies only to information not already in the public domain. If an explicit statement of agreement has been made on the extent of the confidentiality to be afforded to the provider of the information, for example, in a consent form, this may constitute a contract. This need not be in writing. Disclosure of information subject to such a confidentiality agreement would constitute a breach of the duty of confidentiality and possibly a breach of contract.
The duty of confidentiality is not absolute and is not protected by legal privilege. Exceptions occur when:
Researchers who are required to share their research data should ask for participants' consent to share data under agreed terms and conditions, with anonymisation if necessary.
There are also ethical obligations on researchers working with children to make provision for the required actions to be taken in cases of disclosure of child abuse. For more information, the international project on Ethical Research Involving Children is a comprehensive resource.
The UK Data Service has recently upgraded its data discovery and access systems. Read more about the changes to our new Data Catalogue and ‘My Account’ area.