Genomic Data Is Transforming Patient Care: The 1+MG Initiative Explained
There is an incredible benefit for society that we have already derived from genomics, and we can continue to derive into the future.
All of us as citizens will benefit from improved genomics, improving our understanding of disease and improved healthcare.
There’s an enormous goldmine lying there in the genomics data.
Question: What is the European 1+ Million Genomes (1+MG) Initiative?
The European 1+Million Genomes Initiative is an effort across 25 EU countries and Norway moving towards cross-border access to high quality genomic data, affiliated clinical data to enable better research, improved healthcare and also policy making.
The data that we plan to include in this infrastructure are genomic data - the sequence of an individual’s DNA and also certain aspects of the clinical picture for that individual.
We need both genomic data and clinical information to correlate genetic changes in the genomic data with certain clinical features of the individual.
Question: Why is the 1+MG Initiative needed?
We need to scale up the capacity because not one European member state can do it alone, especially for rare diseases. We need to compare the genetic data of one individual patient with the entire database that can be available thanks to this initiative.
Genomics and identifying causes for rare diseases are all about pattern recognition. The more data you have, the greater your ability to recognise what is normally present in a population from what is pathogenic and potentially disease causing.
Question: What is the 1+Million Genome Infrastructure doing?
It is building the technical, legal and organisational infrastructure to provide cross-border access to genomic data across Europe. These data are stored locally, but the access is federated, which means that clinicians can have access in a cross-border fashion.
With larger amounts of high quality genomics data and associated patient data, the infrastructure will enable research and drive personalised medicine forward.
Question: How are we ensuring data is secure?
In terms of data security, there is European legislation and local legislation that will guide the requirements in each country.
We have something called “data protection by default and design” that makes everything secure from the very beginning. We only open up the parts that need to be open with control access for those who should have access to the data.
Question: What is the benefit of being part of the Initiative?
Those that would benefit immediately are the patients with cancer, rare diseases or cardiovascular diseases. But it’s not only about patients, it’s also about citizens.
Take Sweden as an example, one of the benefits for the country to be part of the 1+MG Initiative is being able to access data from other countries. Sweden is a small country, getting access to data from 400 million inhabitants will increase the possibilities for research and healthcare development and innovation.
This project is game changing for the field of genomics. It will put Europe at the forefront of genomics research. It is also an opportunity for Europe to have impactful infrastructure in place for genomics that relates to healthcare and has benefits for citizens and individuals.