In June, the government brought its proposal to the parliament on the establishment of a new authority, the Genome Center. The proposal has received exceptionally strong criticism from experts in the field of genetics, most of whom consider the center pointless and even harmful.
Family- and Minister of Basic Services Aki Lindén (sd) defends the government’s proposal to establish a new authority in Finland, the Genomikeskus. He considers the show a step forward.
“It is not at all a question of establishing a useless body. You just have to find the right forms of cooperation. I believe that the interaction with researchers will be fruitful”, says Lindén.
In June, the government brought its proposal on Genomikeskus to the parliament, and the proposal is to be discussed in the parliament in the fall. According to it, a national expert authority will be established in Finland, the field of which will be issues related to health-related genetic analyzes and the processing of genetic information.
Read more: A new Genome Center will be established in Finland – with the aim of obtaining information for everyday use in healthcare
The proposal has received exceptionally strong criticism from experts in the field of genetics, most of whom consider the center pointless and even harmful. They wrote about it on the HS opinion section in July, for example, professor of molecular genetics at the Karolinska Institute Juha Kere and chief physician of hereditary medicine at Oulu University Hospital Jukka Moilanen.
Also the Council for the Evaluation of Legislation criticized the bill that it is difficult to get a comprehensive overall picture of the effects of the Genomikeskus.
Lindén’s in my opinion, it is clear from the bill that a center is needed.
“I am not defending this only ex officio and only because this has been prepared since 2014 and already Juha Sipilä during the government and that this is included Sanna Marini to the government’s government program.”
According to him, the purpose of the Genomikeskus is to support experts in universities, hospitals and companies and bring them together. There would be six or seven employees in the unit.
He compares the project to the National Cancer Center Fican.
“Even there, only a few people work, but many thousands of people do cancer research and cancer treatment at us in hospitals and universities in a network-like manner,” says Lindén.
“It is a coordination center that maintains a discussion related to this, to which ministries and others can turn when an expert view is needed.”
The tasks of the Genome Center are listed in the bill, for example, giving recommendations in its field, developing stakeholder work and regional activities, offering citizen advice, and promoting social debate and research and education in the field. The law is due to enter into force at the turn of the year.
Linden says that he has received messages from researchers and has tried to familiarize himself with their criticisms. He says that he got the impression that the center of the criticism is specifically the establishment of the authority.
“Of course you shouldn’t go and interpret, because there is always a risk that it will be interpreted incorrectly. But they see that forming an authority unit would in some way fetter and bureaucratize this activity,” says Lindén.
In the minister’s opinion, it is a misunderstanding, because research would not, for example, be centralized under the new authority.
“I have had a lot of contact with researchers as the director of two large university hospitals, and I know that researchers often value their own point of view and are a little afraid of official supervision and guidance.”
Genome Center have been trying to establish for years. In the past, the same bill has tried to propose the establishment of a genome registry, but the latest time it was decided to split the bill in two.
The genome center is presented now and the genome registry possibly later. The establishment of the register has been criticized as containing, among other things, data protection risks and few public health benefits.
However, according to Lindén, there may not even be a genome registry, as the matter will be left to the next government to decide. What is the position of the minister himself, should a register be established?
“I don’t have to have any opinion about it, because it is not shown. This government will not present any genome register,” says Lindén.
However, the national genome strategy is currently being updated and, according to Linden, it will be published at the turn of August or September.
The costs of the center would be 1.5 million euros in the year of establishment and approximately one million euros per year thereafter.
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