Data protection in research

Many branches of science study people. Health researchers, for example, collect vast amounts of personal data and use them as the basis of scientific studies such as statistical evaluations.

In doing so, researchers are encroaching upon personal rights that are protected by the German constitution (Art. 2 Par. 1 and Art. 1 Par. 1).

Everyone who collects personal data for scientific purposes has the duty to find the best possible balance between protecting individual rights and maintaining the freedom of science, research and teaching. Data protection acts at the federal and state level establish guidelines for this. Institutions also handle the sensitive personal data of the researchers they employ.

Working group of data protection commissioners at non-university research institutions

Data protection commissioners are responsible for raising awareness of data protection among research institutions and their employees, working to ensure adherence to applicable laws and monitoring compliance with those laws. They also provide information on the subject of data protection and advise researchers on how to collect personal data in accordance with regulations. Institutions have a vested interest in respecting the trust of those who participate in their studies and provide personal data, often voluntarily and at no cost, by ensuring that such data are treated with the utmost care.

The Helmholtz Association is committed to promoting data protection in the research community and so it has joined up with the Max Planck Society, the Leibniz Association, the Fraunhofer Society and the German Research Foundation to form a working group of data protection commissioners.

The working group includes the data protection commissioners of all of the Helmholtz Association’s 18 research centers.

By bringing together data protection commissioners with backgrounds in law, business, IT and auditing, the working group is well equipped to tackle data protection issues from all angles.

The current head of the working group is Marina Bitmann of the Karlsruhe Institute of Technology (KIT).

The semi-annual meetings of the working group will be an opportunity to share experiences and develop proposals, official statements and recommendations on the subject of data protection. Commissioners will also discuss the practical implications of current developments, new bills and innovative technologies for data protection and scientific work at their research institutions.

Working group of data protection officers at non-university research institutions

It is the task of the data protection officers to sensitize the research institutions and their employees to the issue of data protection, to work towards compliance with the legal provisions, to monitor compliance with them and to be available as contacts on the subject of data protection. They advise researchers on how to proceed, for example, when collecting personal data in order to comply with legal requirements. In doing so, the institutions are concerned to justify the trust placed in them by those who often provide their personal data voluntarily and free of charge to the researchers by ensuring that they are protected in the best possible way.

The Helmholtz Association, together with the Max Planck Society, the Leibniz Association, the Fraunhofer Society and the German Research Foundation, is committed to data protection in research. Together, they form the Working Group of Data Protection Officers.

For the Helmholtz Association, the respective data protection officers and contact persons for data protection at all 18 Helmholtz centers are represented in this working group.

The composition of the working group represents an overarching approach to the various problems relevant to data protection. The members come from the fields of law, business administration, IT and auditing.

Currently, Mr. Ronny Repp from the German Center for Neurodegenerative Diseases (DZNE) acts as chairman of the working group.

The working group meets every six months to exchange experiences and develop proposals, statements and recommendations on the subject of data protection. Current issues, new draft legislation and innovative technologies are discussed with regard to their impact on data protection and scientific work in the research institutions. At the same time, it prepares data protection-compliant implementation in the scientific institutions.