Consent for data sharing

Informed consent is an ethical requirement for most research and must be considered and implemented throughout the research lifecycle, from planning to publication.  Gaining consent must include making provision for sharing data and take into account any immediate or future uses of data.

Failure to properly and fully address issues of informed consent may restrict the opportunities for initial use of data, publishing your results and sharing data

Overview

In the past, researchers have focused primarily on gaining informed consent to enable data collection, but researchers should also inform participants about how research data will be stored, preserved and used in the long-term, and how confidentiality, where promised, will be maintained.  Contrary to what some researchers or research participants believe, even sensitive materials can be shared ethically. At a minimum consent forms should not preclude data sharing, such as promising to destroy data unnecessarily.

To ensure that consent is informed, consent must be freely given with sufficient information provided on all aspects of participation and data use. There must be active communication between the parties. Consent must never be inferred from a non-response to a communication such as a letter.

Consent procedures must be tailored for the specific research context, methods and sample, the nature of the data (personal, sensitive, level of detail), the format of the data (surveys, written, recordings,) and the planned data uses and handling. This will influence the type of consent and consent process used.  More detailed requirements and examples of these are offered in the sections on gaining written or oral consent, and consent forms.

At the UK Data Service we are aware that informed consent can be a difficult topic.  Our role is to provide concrete advice for researchers who have to make decisions regarding consent and who may be grappling with the practicalities of participant recruitment challenges, multiple and sometimes conflicting guidelines, and requirements of Research Ethics Committees (RECs). Consult also our guidance on gaining ethics approval.

Core principles

The provisions of both European and UK law, such as the Data Protection Act, and guidelines of many professional research organisations recommend the following principles be followed to ensure that consent is informed:

  • consent must be freely given with sufficient detail to indicate what participating in the study will involve
  • there must be active communication between the parties - what is expected from participants and why their participation is required
  • documentation outlining consent has to differentiate between consent to participate and consent to allow data to be published and shared
  • consent cannot be inferred from a non-response to a communication such as a letter or invitation to participate.

 

Informing participants

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