Handling research data with care
This information applies to all processing of personal data that takes place in the context of scientific research under the responsibility of Tilburg University and applies to anyone working under the responsibility of Tilburg University.
The GDPR also has a number of important implications for scientific research. By handling research data with carefrom the start, you no longer have to arrange matters at the end of the process. By establishing a processing basis and filling in a processing register, you have already thought about the necessity of the data, the type of data you need to collect and how you are going to collect, analyze and store it.
When using panel or public datasets, in some cases the GDPR does not apply, for example if the data is anonymous. This document helps determine whether the dataset falls within the scope of the GDPR.
Three phases of scientific research
In scientific research, three phases are relevant with respect to personal data: The phases before, during and, after the study.
These three phases have their own aspects with regard to the protection of personal data that the researcher must take into account.
During research, the following issues play a part for each phase:
- Making a data package
- Sustainable archiving
How do I arrange for informed consent?
One of the legal processing principles for academic research is the respondent's consent. If special personal data are processed of as a part of academic research, explicit permission must be givenby the respondent.
What about research data retention and retention periods?
This part of the policy describes the elements of careful handling of data that are important for the completion of any research in which personal data is processed and the way Tilburg University ensures the careful handling of data at this particular stage of the research. In doing so, the retention periods and data capacity are dealt with successively.
What are the rights of respondents?
The respondent has a number of rights before, during and after the survey.
What are personal data and how do I process them carefully?
This guideline only applies if personal data are processed of academic research.
Who is responsible for the research data policy?
The principal researcher is responsible for compliance with the research data policy and must ensure that everyone who participates in the research under his or her responsibility (e.g., PhD researchers, student-assistants and students) complies with the data protection policy and data management regulations.
How do I deal with datasets that contain personal data?
Before the start of a research project, a researcher makes the decision to collect data him/herself or to use existing datasets or a combination of the two. This process, if applicable, takes place simultaneously with the application for the ethical review.
How do you guarantee the careful handling of research data with personal data?
This section describes the elements of careful handling of data that are important during any investigation in which Personal Data is processed. It also describes the way in which Tilburg University ensures the careful handling of data.
Registration form Ethics, Data Management and GDPR
Before starting scientific research, researchers must fill in a registration form concerning ethics, data management and the General Data Protection Ordinance (GDPR).
What are the different types of data sets?
Discussed are audio and video recordings, interviews and observations, experiments in labs, eye tracking and medical screening (MRI/EEC/ECG....)
Medical screening (MRI/EEG/ECG...)
A number of scientific studies make use of medical screening such as MRI, EEG and ECG. The results constitute special personal data, to which the following guidelines apply.
Audio and video recordings as dataset
Audio and video recordings are regularly used in academic research. Sometimes these recordings can be made anonymous by blurring faces, or just filming hands, but this depends strongly on the purpose of the study.
Some scientific studies use eye-tracking to track eye movements. One example is a study on the way people look at websites.
If wearables, such as a Fitbit, are used for an academic study, the following guidelines apply.
Interviews, observations, and experiments in labs
Researchers often make reports of interviews and observations. In some studies, experiments with test subjects are done in labs. Sometimes special personal data is measured, for instance taking someone's blood pressure to see if they are experiencing any stress.