Blad met gegevens, foto Vladislav Bulatov

Handling research data with care

What are the rights of respondents?

The respondent has a number of rights before, during and after the survey.

Right to information

Respondents must be clearly and properly informed in advance about the use of personal data processed in the context of research. This must be done:

  • Informed consent
  • Privacy statement on the website
  • In case of reuse of existing datasets, this is done by providing information. If the researcher has contact information, this information should be sent personally and otherwise publicly available on the Internet.
Right of inspectionRespondents may at any time access the personal data collected concerning them.
Right of rectificationRespondents may at any time access the personal data collected concerning them.
Right to restrictionRespondents have the right to limit the processing of personal data, e.g., pending the outcome of an objection. Restriction means that personal data will be marked and may not be processed or shared during this period.
Right of removalRespondents have the right to limit the processing of personal data, e.g., pending the outcome of an objection. Restriction means that personal data will be marked and may not be processed or shared during this period.
Right of objectionRespondents may indicate that they do not (or no longer) want their data to be processed.

For the aforementioned general rights of the data subject, certain exceptions have been made in the GDPR with regard to access, removal, correction and limitation for scientific research.

For academic research, the following details apply

  • Inspection, rectification, restriction and removal do not apply if this could seriously threaten the scientific research. Respondents cannot invoke this.  However, a researcher is allowed to cooperate.
  • The above exception only applies if the necessary provisions have been made to ensure that the personal data can only be used for scientific research.

If it is unclear, the ethics committee of the school should be consulted.

Who is responsible for removal, correction and restriction?

  • The researcher first of all agrees with the ethics committee on the rights of removal, correction and restriction.
  • The researcher shall inform the data protection officer of the application of the law and the decision thereon for central registration.

Can a respondent revoke the consent?

If the processing of personal data is based on consent, the data subject has the right to revoke this consent. There is also no exception for academic research.

Withdrawing this consent should be as easy for respondents as giving this consent. This means that if it is by means of a form, it can also be done by means of a form.

If a respondent withdraws their permission then this means the following:

Withdraw permission for the investigationThe respondent does not participate in the research and all his/her data should be deleted.
During research

The main rule here is that the data of the person who withdraws his consent must be removed from the research database BUT this threatens to make the achievement of the purpose of the research impossible or seriously compromised. In that case, the research data must be completely anonymized so that it can no longer be traced back to the person in question.

If a full cohort withdraws consent, the investigator should consult with the ethics committee and the data protection officer.

For the controllability of the research, it is often necessary in the context of scientific ethics that data can be traced. This is no longer possible through anonymization, but the substantiation of this, and thus the verifiability, can take place through the revocation of permission (audit trail).

After research

If the research has been published and thus completed:

  • If this has not already been done, the test data must be completely anonymized so that it can no longer be traced back to the person in question;
  • and the revocation of consent will affect the reuse of dataset in the future. The research data of persons who have revoked their consent may NOT be used for future research. The investigator should ensure that this does not happen.