Informed consent is an ethical requirement for most research and must be considered and implemented throughout the research lifecycle, from planning to publication to sharing.
Failure to properly address issues of consent may restrict the opportunities for initial use of data, the publishing of your results and the sharing of the data.
In order to make sure that research data can be made available for future reuse, it is important that consent for future reuse of the data by other researchers is sought from participants. Participants should be informed how research data will be stored, preserved and used in the long-term, and how confidentiality can be protected when needed.
Language to avoid
Consent forms should not preclude data sharing. So promises to destroy the data or promises that the data will only be seen or accessed by the research team should be avoided.
Terms such as 'fully anonymous' or 'strictly confidential' should be avoided, as they are often impossible to define. Better is to indicate how data will be anonymised (e.g. by removing all personal information that could directly identify an individual) and that whilst data will be made available to other researchers, confidentiality will be protected.
How to seek consent for data sharing
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.
It is important to note that researchers are not obliged to obtain consent. They are obliged to seek consent and to impartially advise participants about risks and benefits of research participation and data sharing. Participants then decide what they will consent to.
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