Genomics for Everyone: How 1+Million Genomes Benefits EU Citizens
Genomics definitely has the potential to revolutionise healthcare. Stefania Boccia
I think it is very important that we hear the patient’s voice. Tuula Helander
Partnering with patients and the public is fundamental to an initiative like this. Gianpiero Cavalleri
Question: What is the 1+Million Genomes Initiative? And why is it important?
The European 1+ Million Genomes Initiative started in 2018 with 25 EU Member States and Norway. Genomic data is collected in hospitals during the treatment of patients, and it is very valuable for society if this data could be used for other purposes.
Genomics and identifying causes for rare diseases and cancer are all about pattern recognition. Therefore, 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 does this Initiative mean for healthcare providers?
Genomics can revolutionise healthcare in the long run. To do so, we need to get to the scale of data to impact better research and better healthcare. By working together, countries can analyse data at a much larger scale.
For example, if a rare disease which only has a few instances across Europe, you need to have a sufficient number of patients in order to detect patterns and do research on it.
It can also be very beneficial to get information about the treatment of patients. Healthcare providers can see the treatments that were successful for one patient can then apply them to another patient.
This initiative will allow healthcare providers to use and take the full power of genomics and genetic data.
Question: What data will be included?
The data that we include in the database is genomic data, which is the sequence of the DNA that is the hereditary information in all of your cells. It is something that can be found in the blood or can even be found in saliva, so it can be simple to collect.
The genomic data will be associated with other data, such as medical conditions or general information about a patient. This combination of data will be very informative for healthcare professionals.
Question: Who will have access to the data?
1+MG Initiative will allow access to data at the national level. These data will be stored centrally but still accessible from every individual hospital or GP office. This is completely in compliance with the General Data Protection Regulation, so it is completely secure.
When building the data infrastructure, we make it secure from the very beginning. We have a user portal that will be the front end to the database and the data available. The user's identity will be checked to see whether they are authorised to access the data.
Question: How will European citizens, patients and healthcare professionals be involved in and benefit from the Initiative?
A patient who has consented for their data to be used is in full control of how their data is used.
Specific examples of how patients and the public have already been involved in this Initiative in Ireland would be representing the patient and public voice on the steering committee of the project. They were also involved in different elements of the project, for example, understanding use cases of where this infrastructure would be used day to day in Irish research. The real value for scientists is hearing that patient voice, hearing the lived experience and understanding their needs.
In Sweden, the patient organisations are very much involved. They have ideas and good input for the project and areas that are important to them. The patient organisations are happy that this initiative is taking place and that we have better data to improve diagnostics and treatment in the future.