How is research data published and how is my anonymity guaranteed?

All research findings are published using an anonymised approach that prevents any inferences being obtained about you as an individual. This applies particularly in the case of genetic data.

However, some genetic data may be incorporated into high-security research databases (such as the European Genome-Phenome Archive (EGA)) in accordance with good research practice; such databases are not accessible to the general public. This approach is necessary in order to ensure the reproducibility of research results. Access to this data is granted to other researchers only if they fulfil the same requirements as the local research projects themselves. Accordingly, the rights of the donor to privacy, access and objection to the use of their data must be guaranteed, and the planned data processing must be within the scope of the original research purpose.

Strict security standards are applied when processing sequence data from your DNA. Sequence data is encrypted as a matter of course and made accessible to only a small group of people. However, confidentiality risks (such as the possibility that you could be identified as an individual) apply to all collection, storage and transfer of data from your biomaterials, especially in terms of the information contained in your DNA. These risks cannot be mitigated entirely and increase with each potential linkage of one dataset to another – and especially if you yourself publish genetic information online (e.g. for the purposes of genealogical research).