Opinion|Reader’s opinion
In the next few years, Finnish health care will need funding for other purposes than the genome center and registry.
Social and health Ministry has recently brought a draft law on the genome center to the government. It has already been in the opinion rounds in 2018, 2019 and 2021. At that time, it received criticism from specialists in the field and experts in the international human rights code.
Government wants to establish a new authority: the Genome Center. It would regulate and support the processing of genomic data. Genomic information refers to all the information inherited by individuals in medical care, i.e. DNA sequences. The Genome Center would function as a part of the National Institute of Health and Welfare (THL), but as a separate authority.
A national genome register would be established for genome information. It would be huge in size. In the latest bill, the register has been separated into a separate law to be issued later. Data storage and its costs are unclear.
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Gathering genomic data into a national register is a data protection risk.
Cognoscenti do not see a need for a genome center, and the costs of the registry cannot be justified. Genomic information is produced and used by specialized medical care. Specialists in genetic medicine need it to identify rare diseases. They have not seen the benefits of national centralization of information. In the interpretation of the data, we rely on international data banks.
Many stubbornly believe that genomic information could be used to predict common public diseases. The research results of recent years do not support this. The risk coefficients of gene profiles are too weak for predictive disease screening. There is no gene test that predicts national diseases based on genomic information.
Experts have also raised more fundamental problems. Genome information is individual and sensitive. Compiling it in a national register is a data protection risk. Genome data can be used to identify an individual and his relatives. Several experts have stated that many provisions of the law are in conflict with international regulations on individual protection.
Genome information combining it with healthcare information, such as the use of medicines and the course of diseases, is of interest to the pharmaceutical industry. The development of new medicines can be made more efficient with these. This still does not require expensive public investments such as a genome center or registry. Cooperation is already underway with agreements between biobanks, hospitals and pharmaceutical factories.
The preparation of the Genome Act continues, even though the genome strategy that was behind it, which was completed in 2015, is out of date. The ministry has launched an update of the strategy, but the work is in progress.
In the next few years, Finnish health care will need funding for other purposes than the genome center and registry. Our country should not be able to afford pointless expenses and unnecessary new authorities.
Juha Kere
professor of molecular genetics, Karolinska Institutet, Sweden
Jukka Moilanen
chief physician of hereditary medicine, Oulu University Hospital
chairman, Finnish Medical Genetics Association
The reader’s opinions are speeches written by HS readers, which are selected and delivered by the HS editors. You can leave an opinion piece or familiarize yourself with the principles of writing at the address www.hs.fi/kiryotamielipidekeisuis/.
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