On November 24, 2022, the German Data Protection Conference (DSK) adopted the ” Petersberg Declaration “ on the data protection-compliant processing of health data in scientific research as a result of its biannual meetings (see also the DSK press release ). This so-called resolution contains coordinated data protection recommendations and statements from all German data protection authorities, but is not legally binding data in scientific research.
Data protection and scientific research data in scientific research
Even though the GDPR provides various privileges for scientific research , researchers criticize the complexity of data protection requirements at different regulatory levels, usa business fax list which results from the federalism prevalent in Germany. These regulations and procedures are time-consuming and resource-intensive and complicate research projects. In particular, the lack of data is criticiz, which is partly due to so-call “consent fatigue” among patients. Consent fatigue, however, is just one of many “data problems” in research; read more about, for example, the difficulty of data linkage in this article .
DSK demands and recommendations
Many researchers hope that these complex regulatory structures can be overcome in. The near future. This could be made possible through the establishment of. European health data space, an overarching registry law, cons of a popup takeover and other propos solutions. The DSK also takes up several of these demands. However, the DSK’s statements on the data protection-compliant processing of health data in scientific research from. Petersberg Declaration offer researchers only small glimmers of hope and, overall, reveal little that is new.
Furthermore, in its resolution, the DSK addresses the creation of clear responsibilities. Makes it clear that it must be determin by law who is responsible for. Individual processing steps under data protection law.
. It would have been desirable for the DSK to have more clearly emphasized the need for uniform regulations, beyond consent.
Special feature: Record Linkage
The DSK resolution classifies the linking of different data sets (record linkage) as particularly risky because it facilitates the re-identification of a data subject, botswana business directory the purpose limitation cannot be adher to, a the research purpose is generat, potentially leading to false information. However, researchers need precisely this linkage to, for example, research clinical patterns and their origins over several years and draw conclusions from them. This latter possibility is also hinder by anonymiz processing.