Full Program »
Challenges in the relation of informed consent and data archiving
When collecting, preparing, and analyzing your research data you need a proper legal basis for processing. This legal basis should also cover the archiving and publishing of research data once you are done. Usually, the data is only released for secondary use after it has been anonymized or de-identified in some way. When talking about personal data one legal basis is informed consent. According to the European Union’s General Data Protection Regulation (GDPR) this consent is one out of six possible legal bases for processing personal data. It is frequently used in social science research in Germany and other European countries. But there are several ethical and legal issues concerning the relation between informed consent and data archiving and publishing. Every now and then data repositories or data archives like GESIS are faced with cases of dubious consent caused by for example insufficient information. For example, in some cases it is unclear whether the data can be made available for re-use at all. In other cases, researchers relied on a fieldwork company to take care of consent and research participants are only presented with general information about the data collection. In yet other scenarios researcher think that consent would only cover the processing during the project phase. In the latter case ‘anonymizing’ the data is believed to move the data beyond any legal or ethical restriction. Is it necessary to inform research participants in advance about the future use of their data after a project has ended? If no, why not? If yes, why is it not done regularly? In my talk I will give an overview of these challenges and discuss possible solutions.