The shift from curative to preventive medicine and personal healthcare requires the collection, storage and processing of large datasets from multiple -omics. Working with such systems may have inherent privacy risks and invoke ethical questions. Therefore, societal decisions about the government of such data will shape the future of science, especially in the biomedical field. In the past, these discussions were focussed primarily on the anonymization of samples and data, more specifically genetic data. Other discussions are centred around incidental findings and consent within the research context.
Since 2018, the European Union installed the General Data Protection Regulation (GDPR), Europe’s new data privacy and security law. This imposes obligations to organizations anywhere with regards to data from people living in the European Union. The GDPR provides a legal framework to protect the rights of participants and for handling and using data. However, these rules are not yet defined within specific research contexts. There is one common assumption: genomic data is private data since it contains the code from which an organism is built up. However different omics such as epigenetics, proteomics and metabolomics offer a more complex and complete picture of organisms and the interaction with their environment. Earlier research has already shown the personal information content of proteomics data. Hence, it is vital to reflect on these ethical issues and privacy risks on the accumulations of -omics data.
Beyond the Genome is funded by the Research Foundation – Flanders Junior Project (project ID: FN 701000004).
Project Members:
- Kristien Hens (University of Antwerp)
- Kurt Boonen (University of Antwerp)
- Dirk Valkenborg (Hasselt University)
- Gökhan Ertaylan (VITO)
- Frédérique Vilenne (Hasselt University)
- Charlotte Adams (University of Antwerp)
- Ina Devos (University of Antwerp)
- Daan Kenis (University of Antwerp)