How the 1+MG initiative ensures secure data access - Interview with Bengt Persson
In this interview, Bengt Persson, GDI Infrastructure deployment co-lead, shares insights on how the 1+Million Genomes (1+MG) Initiative is developing a federated, secure, cross-border infrastructure that transforms how genomic and clinical data can be used.
What is the 1+Million Genomes Initiative and its aim?
The European 1+ Million Genomes Initiative is a member state initiative, starting in 2018 with 13 countries, and it has now increased to 25 member states and Norway. The initiative aims to provide secure access to high quality genomics data together with clinical data to improve research and get better healthcare, including precision medicine or personalised medicine.
What are the benefits of the initiative?
The initiative will be good for putting Europe at the forefront of genomics research. It will also be very beneficial for the patients because it will enable the breakthrough of precision medicine and personalised medicine across Europe. Meanwhile, when it comes to rare diseases, it is beneficial to have access to much data to enable research in those areas.
What is being done?
In order to realise the initiative, we need to build a digital data infrastructure that is distributed across the member states. This distributed infrastructure also needs to be secure and provide access in a controlled manner across the member states.
The initiative will enable access to data across borders. Larger amounts of high level, high quality genomics and associated patient data will be instrumental in order to enable research that was not previously possible and drive personalised medicine forward.
What kind of data can be included?
It will be genomics data, and it should be of high quality and useful for all countries involved. In the future, we will also include other types of data, such as proteomics, metabolomics and so on.
For the moment, we start with genomics data, and this data will also be related to other databases that are created, for instance, image data or cancer research data. This will then be integrated into the European Health Data Space.
Will data be secure? And how will my data be protected?
When we build the data infrastructure, we make it secure from the very beginning. We have something called data protection by default and design, which makes everything secure from the very beginning. The infrastructure will only open up those parts that need to be open. This is to ensure that the data is securely stored in the various countries and enabled with controlled access only to those who should have access to the data.
Genomics data is very sensitive – it is your personal data. We will do it as securely as possible, so we have all these databases protected by default and design, which means that it is only controlled access. The persons who will access the data are thoroughly checked to ensure that it is the right person, and that they have reasons to request access to the data. For instance, it could be clinicians or researchers who need access to data to make better research for patients in the future.
Who will have access to the data? And how will the data be accessed?
Access to the data will be given to people who need the data for work, such as researchers or clinicians. There will be a controlled access system to check their identity. Researchers and clinicians who wish to access the data need to log on with their institution account and will be checked with two factor authentication in order to be secure. There will also be other types of analysis, for instance, aggregated data statistics, and data that provide annual statistics in each country could be useful for policymakers. That data will not be as sensitive since it is only information about the number of people with a certain disease.
What we build in the initiative is to have a user portal that is unified, a one entrance point, where researchers will be checked and identified. If you are a person who could have access to the data, you will be granted access to certain data in the portal and can see data from Sweden, Spain, Germany or other sites. You will be able to access that data and do analysis, and in some cases, perhaps also download the data.
How does it benefit Sweden?
Being part of the initiative will benefit Sweden because we are a small country. As part of the initiative, we will get access to data from many other European countries, and this will improve research, clinical diagnostics and healthcare, and will also be good for innovation.
Sweden will provide data into the 1+MG infrastructure by ELIXIR Sweden, which has data mainly from the state sector, and Genomic Medicine Sweden, which has data from hospitals in different regions. Genomic Medicine Sweden is a national initiative aiming to get more genomics diagnostics implemented in healthcare. Together with the clinical genomics at SciLifeLab, Genomic Medicine Sweden has created the national guidelines implemented for diagnostics in rare diseases and cancer.
I believe that this initiative also catalyses activities in both Sweden and in other countries. It is beneficial in driving genomics diagnostics forward and improving healthcare in different countries, and enabling better research and innovation.
What does this initiative mean to you?
I enjoy working on the 1+MG Initiative because it will have enormous implications for citizens. It is great to be able to use the goldmine of the large amounts of genomic information. The initiative will also enable the realisation of precision medicine and personalised medicine across Europe and in each country.
I am also very happy that there is such a big enthusiasm among our co-workers and across the different countries in Europe. So I am looking forward to this, and I am also optimistic that the legal boundaries will also be managed in the future.