Finland’s FinnGen project aims to match genome information with over 500,000 blood samples. It will be the largest study of its type. At the helm is Aarno Palotie who spoke to PMF editor Mark Glover about his hopes for the ambitious project, the EU’s Privacy Act and the importance of collaboration.
As Research Director of the FinnGen project I wonder what emotions you feel? Are you nervous, excited? Do you feel under pressure?
I feel all of those things! It is very, very exciting. There has been a large number of people who have done huge amounts of work behind the scenes; civil servants and politicians who have developed the regulatory and legal framework. Then of course all my colleagues who have demonstrated that Finland is a place where this type of project can be done and that the population is willing to participate.
The project is scheduled to last for six years. What would be the one thing that you hope is achieved when the study is over?
What I hope to achieve is many add-on and follow-up projects, I think that’s the key and I hope this happens as the project moves forward. We are looking for many discoveries by combining the data with other biobank data; we know that we need very, very large numbers even though we know that this is a very, very large study.
This project brings together many stakeholders; biobanks, universities, pharmaceutical companies to name a few. How important is collaboration, not just for this project, but for personalised medicine generally?
It’s all about collaboration. Alone we can’t do anything. Sharing data, as we all know, is key to moving forward. I am concerned, however to see how the EU privacy act will be implemented. Originally it was designed for something else, for commercial and social media data. The fundamental goal here is to share data just like UK Biobank are doing. If we start to make this difficult we can stop many dreams that we may have for personalised medicine. One of my colleagues said that currently this type of privacy really protects the healthy ones, but it doesn’t protect the sick ones.
Finland has a liberal approach to sharing data, how important is this to the project and the future of precision medicine in the country?
The amount of work that the Finnish ministries have done to make the regulation functional has provided us with these opportunities. However, there is a fine, fine balance in how you take this forward. If you lose that trust of the population then you can close your shop.
Transparency is important but to be blunt, sometimes I think we are protecting things which are less important and forgetting things which are very important.
What inspires you?
I want to help people and I also want to move the field forward. Of course, underneath is the curiosity; discovering new things, finding new things, which drives me. Sometimes though, curiosity is not enough and it’s the knowledge knowing that you have done something that has been ultimately worthwhile which makes you do what you do.
Aarno Palotie will be speaking at the Nordic Precision Medicine Forum in Copenhagen which takes place from March 20 – 21. You can register for the event here.