How Europe Is Unlocking Genomic Data for Personalised Healthcare: The 1+MG Project

The 1+ Million Genomes Initiative is groundbreaking and I think has the potential to revolutionise healthcare across Europe. Serena Scollen
You need the genomes, you need the genetic data, so that you can choose the best treatment for that patient. Tuula Helander
I like it a lot to work with this 1+ Million Genomes Initiative because it will have enormous implications for citizens. Bengt Pearson

Question: What is the vision of the 1+Million Genomes Initiative?

The 1+Million Genomes Initiative is a declaration by the European Union in 2018 that recognises the increased digitisation of our healthcare system and the opportunities provided by genomics, which in combination can create an environment for more precision medicine through research and in our healthcare system.

The aim of the initiative is to provide secure access to high quality genomics data together with clinical data, in order to improve research and healthcare, including precision medicine and personalised medicine.

Question: What does the Initiative mean for citizens and patients?

Without the knowledge of genomic data, it is impossible to reach the goal of personalised medicine. This is why we need a huge amount of data and tight collaboration with other countries.

For example, there are only 5.6 million people living in Finland, so the country really needs to share knowledge with all European countries.

Question: What data will be included?

Data to be included would be the genomic sequence data, which is your genetic profile - the data that contains all of your genes. This is then combined with phenotypic data, which includes medical and clinical data. Researchers can analyse these data effectively to understand patients’ risk of disease.

Question: How will the data be protected?

Access to these data will be provided to pre-approved researchers, clinicians, scientists, innovators and policymakers. Researchers will be able to access the data securely and analyse that data to understand certain diseases more effectively.

Question: What does the 1+ Million Genomes initiative mean for citizens and patients?

We could study a predisposition to more common complex diseases or understand the cumulative effect of multiple variants that cause a predisposition to a disease.

The Genomic Data Infrastructure will create awareness among healthcare professionals to make genetic tests for predisposition for patients who need to avoid drug reactions. This is relevant for the safety of a patient.

There will also be other types of analysis, for instance, aggregated data, statistics and other data that could be useful for policymakers. There will be opportunities for innovation and this will strengthen Europe’s position for digital health.

Question: How will European citizens and patients be involved and benefit from the Initiative?

The project is of great benefit to Ireland. It is allowing the country to join the Genomic Data Infrastructure. In doing so, Irish scientists can collaborate and learn from European colleagues who are helping us deploy and build this infrastructure.

It is great to be able to use the goldmine that large amounts of genomic information will be. The vision of 1+Million genomes is precision medicine emerging from a European infrastructure that enables safe and secure sharing of genomic data. This will improve healthcare for citizens across Europe and globally because we will understand diseases more effectively and how to treat them.

Contact

gdi-coordination@elixir-europe.org