Processing sensitive data for schizophrenia research

Nordic researchers are incorporating sensitive register data in their cross-border analyses of the interaction between genetic and environmental factors for schizophrenia. Thanks to Tryggve, a new Nordic initiative to advance the utilization of sensitive biomedical data.

Scientists widely agree, that the factors causing people to develop schizophrenia can be found in a combination of genes and environment.

Schizophrenia is rooted in a genetic defect and can develop due to environmental risk factors such as birth complication, head trauma, urban birth or specific infectious diseases. But we need to know more about the interaction between these two factors.

Very large samples

Patrick Sullivan, professor at Karolinska Institutet, Sweden, explains:

“We have made enormous progress in understanding the genomics of schizophrenia. However, there have been few high-quality studies of how environmental effects act, interact, or modify genetic predisposition.

“To perform these studies we need very large samples in order to understand these interactions. These very large samples are available in the Nordic countries, because of our long tradition for national registers. That is why the Nordic countries are probably the best places in the world to do this research.

“But even though this work is incredibly important, it is very hard to do because of legal and ethical issues that – very correctly – wish to ensure the privacy of subjects.

“The data contains highly sensitive information on individuals, such as gene sequences, data on drinking or smoking habits, or presence of inherited disease in the family, there are heavy legal restraints on the use of these data. Also, the data are collected confidentially and according to terms of allowed use signed by the donors.

“So, although all genetic and environmental data now exist and could be analyzed, up until now there hasn’t been any secure way to incorporate these sensitive register data into our analyses.”

Tryggr means trusty

Enter Tryggve, a new Nordic project created to advance the utilization of sensitive biomedical data for research in cross-border environment.

Tryggve is a Nordic name that stems from Old Norse “tryggr”, meaning “trusty, faithful, true, safe”, just as the word “trygg” still does in most Nordic languages.

Tryggve connects the expertise and resources at the Nordic Nodes of ELIXIR, a European infrastructure for life sciences, with the Nordic e-infrastructure collaboration, NeIC.

The aim of Tryggve is to improve current practical routines for sharing sensitive data, and so giving scientists more time for science.

Using a secure computing environment, Professor Patrick Sullivan, with the assistance of Tryggve security experts, is now combining data sets from Denmark, Norway, Sweden and Estonia to create a joint data set with a total of 6000 cases and 8750 controls.

Colleagues from Finland will participate in a few years. Analyses are under way to study interaction of genetic risk with established environmental risk factors for schizophrenia.

As well as technical support, the Tryggve project has also provided professor Patrick Sullivan with legal expertise and a professional evaluation of the legal aspects of transferring the data sets between the Nordic countries.

Fulfill the promise

Professor Sullivan concludes:

“All data types in this study are sensitive. The genetic data are identifiable and need to be handled securely at all steps of analysis. The environmental data are from national registers, and are generally viewed as highly sensitive.

“So, to accomplish our scientific aims, we needed a secure place to conduct harmonized analyses of gene-environment interactions and risk of schizophrenia.

“Tryggve allows us to do so. It’s something we have wanted to do for a very long time – to try to fulfill the promise of full Nordic research on the causes of schizophrenia. It would be extremely difficult – if not impossible – for us to do this work without the help of our great colleagues in Tryggve and NeIC.”

The secure services are also available for researchers outside the Nordic countries. More information can be found at: https://wiki.neic.no/tryggve