Role of informed consent in ethical data collection, sharing and reuse
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 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?
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?