Best practices for informed consent

Best practices for informed consent

These rules contain important recommendations for informed consent, conducting interviews and the processing of interview results. However, they are not comprehensive. Specific situations may demand additional considerations. These rules do not replace relevant legal regulations in any way.

The researcher conducting the interview has to make sure that all respondents know that they have the right and to make sure that they can exercise the right:

  • To stop participation at any moment (meaning that research participants know from first contact that participation is voluntary)
  • To be asked for informed consent (meaning that research participants must at all times be fully informed about the research process and purposes, and must give consent to their participation in the research)
  • To ask questions and receive understandable answers before making a decision
  • To know the degree of risk and burden involved in participation
  • To withdraw themselves and their data from the project at any time
  • To know how their data will be collected and stored
  • To know of any potential commercial exploitation of the research, which implies that human respondents will not be subjected to any acts of deception or betrayal in the research process or its published outcomes.

The researcher conducting the interview has to make sure that all demands by respondents concerning anonymity will be met. This includes the careful handling of any information which may reveal the identity of respondents. Respective documents or files (including audio files with a recognizable voice) are to be stored separately from transcripts and should not be available at any time via the internet (neither through email communication nor through storage on a server or a cloud).

Excerpts from interviews are only presented and published in a form which has been clarified with the respective respondent. The researcher has to make sure that the presentation of interview results does not reveal any information which the respondent does not want to reveal. The respondent’s consent has to be documented, either in written or verbal form. Requests per email are not permissible if they involve sensitive issues as it cannot be assumed that email communication will remain confidential.

If the correctness of a quote from an interview has to be proven to outside examiners or colleagues, an ethics commission should conduct or commission a respective check of the original interview documents.

DARIAH-EU provides a free Consent Form Wizard, a tool which guides you through a questionnaire that will consequently generate a General Data Protection Regulation (GDPR) compliant form for obtaining consent from data subjects, tailored to your specific purpose and the data categories you intend to collect.

An example consent form, provided by the UK Data Service and fully in line with the General Data Protection Regulation (GDPR), can be found here. More information and further example consent forms can be found here.

If you don't have consent to publish the data and can't get it retroactively, it is still possible to publish your data collection as "metadata only" - without the data itself. In this case, the metadata and the description of data collection will be published, but not the data itself. Still, this would make it possible to find, discuss and cite your dataset with a DOI.