Ethics

 

Much research data - even sensitive data - can be shared ethically and legally if researchers employ strategies of informed consent, anonymisation and controlling access to data.

If you are carrying out research, especially research involving human participants, consent forms must include a request for data to be shared and reused. The methodology for anonymising data before sharing takes place should be described within any accompanying participation information provided.

 

Consent

Informed consent is an important ethical requirement for most research projects and must be considered and implemented throughout the life of the project, from planning to dissemination.

When gaining either oral or written consent, it should include provision for sharing data, such as what data will be collected, the boundaries of how the data will be used and the right for the participant to withdraw.
Failure to properly and fully address issues of informed consent will not only restrict the opportunities for initial use of data, publishing your results and sharing data but will impact upon the ethical status of your proposed research.

See the UK Data Service’s page on 'Consent’ for guidance.

 

Anonymisation of research data

The confidentiality of information supplied by research participants and the anonymity of respondents must be respected. However, ‘direct identifiers’ (names; addresses; contact details; images) can be removed from data before it is shared and ‘indirect identifiers’ (personal characteristics; workplace; occupation) can be aggregated.

See the UK Data Service’s page on ‘Anonymisation’ for guidance.

 

Controlling access to data

It is important to recognise that even sensitive and confidential data can be shared for research purposes. Access to such data can be controlled through the implementation of restrictions (i.e. embargoes or specific researcher access) but it is important that this is identified at an early stage, for example: In your Data Management Plan, in any ethical approval applications and certainly prior to the commencement of data collection.

For further details, see the guidance provided by the UK Data Service within their ‘Legal and ethical issues’ webpages.

 

How to gain ethical approval:

AU guidance, support and details on the assessment and application process can be found here. It is important to note that gaining ethical approval will not satisfy data management requirements by itself - you must ensure that issues of consent, anonymity and access have been considered in your data management plan and prior to any data collection.