FinnGen program – unique benefit for the mankind or selling Finland by the gene?

By Pekka Simula 21 December 2017

In 2017, Finland has celebrated its first century of independence. Among the many festivities and next-century-initiatives that marked the year, the recently launched FinnGen program stands out with significant potential for long-term impact. This public-private collaboration will collect genetic information from 10% of Finland’s population and combine the data with the country’s unique comprehensive demographic and health care records.

This creates immense opportunities. FinnGen can help understand disease risk factors, improve health care, develop better drugs, and advance scientific research in multiple fields. All of that will require advanced processing of gigantic amounts of data; fortunately Finland has also leading expertise in software engineering and Artificial Intelligence. It is easy to understand why several big pharmaceutical companies have already invested in this project: Abbvie, AstraZeneca, Biogen, Celgene, MSD, Pfizer, and Genentech.

So what does FinnGen mean in practice? Have we sold our genes to the international Big Pharma?

Absolutely not. Big Pharma are actually funding our national institutes to create a unique research platform. Finland will then build new scientific research opportunities based on that platform, such as selling drug development services to international companies, and develop unique expertise in the growing fields of personalized medicine and genetic data. This could be compared to having the globally leading vehicle test grounds in Finland’s Lapland: While it’s a pity Finnish car manufacturers don’t use them (because there aren’t any) it makes an important and growing business. We didn’t sell Lapland. We are just clever building businesses there.

We are not selling our genes to Big Pharma either; we are creating a unique research platform in Finland and already having Big Pharma pay for it! Certainly some people dislike the idea (some people don’t appreciate the test grounds in Lapland either); fortunately this is completely based on volunteering. Only if you choose so, your genome will be sequenced and the data made available for research purposes, and only for as long as you choose. That’s a big difference compared to the likes of Google or Apple who collect our demographic data, sleeping patterns, heart rate, and God knows what, and use those data however they please…

FinnGen’s potential is mind-blowing. For instance, today’s drug development is based on statistics: A new (expensive) drug may be good enough if it works well in six out of 10 people and only one gets nasty side effects. In the future, genetic information can help target the rights drugs for the right patients in optimal doses. This will bring huge savings to societies and treatment benefits for patients.

In terms of Finland’s national economy, FinnGen-based data platform could attract new international investments in drug development worth hundreds of millions a year. And we are not talking Finns as Big Pharma’s guinea pigs. This would mean targeted studies focused in high unmet needs like metastatic cancer where a clinical study is the patient’s only hope. Again, those studies would be based on volunteering. Would you consider volunteering in a clinical study if you were diagnosed with ALS and sitting in your wheelchair waiting to suffocate? Would you welcome such studies in Finland, fully paid by a drug development company?

Yes, I believe FinnGen creates an opportunity of the next century for Finland!

But why should I bother volunteering?

About 20 years into Finland’s independence Soviet Union declared war on us and attacked with a massive army. Our grandfathers and great-grandfathers were not asked if they’d bother volunteering. Thousands gave their lives for our freedom.

FinnGen won’t have that dramatic consequences. However it doesn’t require much either. Give your consent on their website (sorry, Finns only!), visit your local health center as instructed to give a couple of drops of blood, and you are helping make Finland a leading country in genetic research. At the same time, you may help countless future patients all over the world.

I already volunteered.

Herantis develops novel drugs based on globally leading scientific research in Finland. Herantis has no links to the FinnGen program and does not expect any direct or indirect benefit from FinnGen at least in the coming years.
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