Consent for data sharing
Role of informed consent in ethical data collection, sharing and reuse
Informed consent is an ethical requirement for research involving human participants, and must be considered and implemented throughout the research lifecycle, from planning to publication to sharing. Failure to properly address issues of informed consent may restrict the opportunities for initial collection and subsequent use of data.
Ethically, informed consent plays an important role in two key areas: research participation and the use, including the sharing, of collected information. It ensures participants are well informed, understand the information shared, and can make an informed decision about participating in the research.
Consent for research participation: Consent for participation in research is a fundamental principle of research ethics, which is sought before any involvement in research activities and applies to all participants. It usually involves informing participants about:
- What is the purpose of the research?
- What is involved in participating?
- What are the benefits and risks of participating?
- What is the procedure to withdraw?
- Is there information on privacy and confidentiality?
Consent for Use of Collected Information: It is equally important to inform the participants about the uses of the information or data collected in the study as well as beyond the study and future uses. For example:
- What information is being collected how it will be stored and for how long?
- How the information will be used, i.e. dissemination, publishing, sharing for future use, etc?
- How the data will be shared, e.g. de-identified, anonymised transcripts, audio recordings, survey database, etc?
- Who will have access to the data, and whether it is secure?
Role of consent and the UK GDPR
Under the UK GDPR, consent is one of six lawful bases for processing personal data. While “public task” is commonly used as a lawful basis in the UK, consent may also be utilised. The legal basis is usually defined by the host organisation; therefore, researchers should consult with their institution to determine the appropriate lawful basis for their specific project.
Consent can also be used for processing special category data. However, in practice, institutions such as universities often rely on “research in the public interest” as the lawful basis for processing such data, provided appropriate safeguards are in place. These safeguards may include measures such as anonymization, encryption, or restricted access to sensitive data to ensure compliance with legal and ethical standards. By aligning with institutional guidance and legal requirements, researchers can ensure their data processing practices are both compliant and ethically sound.
Therefore, for researchers, consent serves two distinct purposes:
- As an ethical obligation when involving participants in research informing the protocols for participation and uses of collected data.
- As a lawful basis under data protection laws.
Researchers must ensure they address both aspects appropriately and avoid conflating ethical research consent with consent for data processing under the UK GDPR. It is essential to distinguish between these two applications of consent.