Finland is finally getting a center for processing genetic information, but now some researchers consider it pointless

The law on the genome center is coming up for consideration by the parliament and it would enter into force at the beginning of next year. Some genomics researchers consider the center pointless.

Finland is finally getting a center for processing genetic information, but now some researchers consider it pointless
The task of the Genome Center would be to monitor and regulate the use of Finns' genetic information. Illustration of the DNA double helix. Photo: Pixabay

The government bill of the genome center is ready and the parliament should start processing it in the fall. The purpose is to support the responsible and equal use of human genetic information for the benefit of human health.

The Genome Center would be administratively part of the Institute of Health and Welfare but would act as an independent national expert authority in matters related to health-related genetic analyzes and the processing of genetic information.

The center has been prepared for years, but progress has been slow. Now the researchers have criticized the necessity of the whole project.

Professors Juha Kere and Jukka Moilanen wrote in Helsingin Sanomat (July 3). that the millions of euros demanded by the center would have a better use:

"Many people stubbornly believe that genomic information could be used to predict common public diseases. The research results of recent years do not support this."

In their writing, the professors appeal to other experts, who have already had time to be consulted in three different rounds of opinions when preparing for the establishment of the genome center.

Professor Aarno Palotie agrees with the criticism. He does not see the genome center as necessary - on the contrary, according to Palotie, it could even be a detriment to research in the field.

- You can't imagine that if we put a couple of million a year into some center, that it would produce something useful. I'm sorry for such a rambling expression, but that's just the way it is. You have to face the realities.

Professor Aarno Palotie on the bank of Kokemäenjoki in Pori.

Minister of Family and Basic Services Aki Lindén and  Professor Aarno Palotie Photo: Markku Sandell / Yle

A useless authority to control genomic information?

According to Palotie, the core issue is what is meant by the genome center. He does not understand why the center is now presented as an authority.

- For other health care, such as the treatment of a cancer patient or a heart patient, official solutions are not needed, but general guidelines for treatment. We have had a good and effective care system in use for a long time. We could use similar instruments in this case as well.

According to Palotie, the original idea of ​​a variation database of Finnish genes turned out to be too expensive a solution. Now the researchers maintain some kind of database, but it is much less than what the authorities thought the need would have been.

When this expensive solution did not come, Aarno Palotie sees very little need for official action.

- There would be better addresses for these funds than establishing yet another under-resourced authority.

The minister considers the center necessary

The Minister of Family and Basic Services, Aki Lindén (sd.), who brought the matter to the parliament, sees it differently, although he is careful in what he says. An expert hearing will be organized in the Parliament, where different aspects will be reviewed.

- Of course, I advocated giving this law to the parliament for consideration, the government then gave it. After I have gone through the background, it may be a case of an unwarranted concern, Lindén estimates.

Minister of Family and Basic Services Aki Lindén in Pori in the summer of 2022.

Minister of Family and Basic Services Aki Lindén (sd.) does not understand the criticism of the researchers but intends to find out what the fuss is about. 

According to him, a centralized body of experts is needed in Finland. The unit planned now is small and would work in connection with the Institute of Health and Welfare. According to the minister, its costs would be around one million euros per year.

- It would specifically be an expert body and its activities would not really be out of the hands of any researcher or other entity. I think it's feared now.

Lindén thinks that it could be that researchers are afraid of someone invading their territory. He wants to continue the conversation with the researchers and find out what the fuss is about.

The practical work of the Genome Center would be to create international connections, educate citizens and hold a socio-political debate on the use of genetic information. It would also cooperate with expert groups, i.e. the same ones from whom criticism has now come.

The genetic information of Finns is already being collected extensively

Professor Aarno Palotie of the University of Helsinki is the research director of the Finnish Institute of Molecular Medicine (FIMM) and FinnGen(you switch to another service)- the project research director.

The genome data of almost 500,000 Finns have already been gathered within the framework of Finnen. Their more detailed analysis is the next phase of the project.

FinnGen is a joint research project of the public and private sectors, in which Finnish universities, hospital districts, THL, Veripalvelu, biobanks, FINBB, and several international pharmaceutical companies participate.

Aaron Palotie says that Finns have developed their own gene variations. Some of them are disease-protecting, and some are predisposing variants. In the next step, FinnGen will move on to studying the collected materials.

- We should understand what these gene variants do biologically. How we move to this development of understanding is a completely new question, says Palotie.

Data protection and security are often brought up when discussing the collection and storage of people's genetic data. Palotie considers the information security of biobanks operating in connection with hospitals to be sufficient because patients' data protection is already taken care of in hospitals.

Source: YLE