Beyond The Genome
The current shift in healthcare from curative to preventive medicine and towards personal or precision medicine requires the collection, storage and processing of large datasets from multiple -omics data sources. The large-scale collection and use of such rich health data invokes ethical questions, including questions of privacy and re-identification. Therefore, it is important to discuss ethical, legal, and social implications of large-scale omics data, research, and governance. In the past, these discussions have primarily focused on genomics research and the implications of incidental findings, informed consent, and anonymisation of samples and data in that context. However, other types of omics research (proteomics, metabolomics, ...) and ethical issues have not received the same attention in ethical research. This skewed attention to omics fields is also clear in legal applications, such as the EU's General Data Protection Regulation (GDPR) where genomic information is clearly delineated as personal data, but the classification of epigenetic, proteomics, or metabolomic data is unsure and highly context-dependent. Earlier research has already shown the personal information content of proteomics data, possibly impacting governance requirements in this field. Additionally, epigenetics, proteomics, and metabolomics research can offer a more complex and complete pictures of organisms and their interaction with their environment resulting in new ethical considerations beyond re-identification.
Hence, it is vital to reflect on these ethical issues and privacy risks on the accumulations of -omics data. In response, the beyond the genome project aims to identify and investigate ethical issues specifically in the context of large-scale proteomics research. The project is highly interdisciplinary with researchers from bioinformatics, precision medicine, proteomics, philosophy of science, and ethics backgrounds. We also pilot a 'bioethics-in-science' approach in which ethical research and proteomics research become highly integrated to create ethical investigations grounded in the actual practice of proteomics research, and proteomics research(ers) attuned to ethics.