CREATE & MANAGE DATA
CONSENT & ETHICS
ETHICAL / LEGAL / OVERVIEW
Collecting, using and sharing data in research with people requires that ethical and legal obligations are respected. Laws such as the Data Protection Act, Freedom of Information Act and Statistics and Registration Services Act also govern the use of some kinds of data.
Every researcher is expected to maintain high ethical standards. Ethical guidelines for research involving people are typically issued by professional bodies, host institutions and funding organisations. The key principles of research ethics that have a bearing on sharing or archiving confidential research data are:
- a duty of confidentiality towards informants and participants
- a duty to protect participants from harm, by not disclosing sensitive information
- a duty to treat participants as intelligent beings, able to make their own decisions on how the information they provide can be used, shared and made public (through informed consent)
- a duty to inform participants how information and data obtained will be used, processed, shared, disposed of, prior to obtaining consent
- a duty to wider society to make available resources produced by researchers with public funds (data sharing required by research funders)
Relevant laws include the Data Protection Act 1998 and other legislation.
Data protection legislation applies only to personal data or sensitive personal data and not to all research data collection from participants or to anonymised data.
In research with people there may be a perceived tension between data sharing on the one hand and data protection on the other. Researchers and ethics committees may believe that research data obtained from people cannot be shared as this would violate data protection and research ethics and that promises must be made to research participants to keep all research data strictly confidential.
If you are a researcher or work with a Research Ethics Committee (REC), you might find the information on these pages on how research data can be shared without breaching ethical or legal responsibilities useful.