The Finnish government has proposed that a new national authority be established to promote the responsible use of genomic data and administer the national genome database. (Handout – Jyrki Komulainen, Finnish Red Cross)


FINNISH HEALTH CARE providers and organisations have expressed their serious reservations about a government proposal on a new genome centre and the processing of genomic data in Finland.

All 29 of the statements received on the proposal by last week’s deadline were at least partly negative.

The Finnish Medical Society (Duodecim), for example, expressed its concern that the proposal could make the regulatory environment so difficult to navigate that it could “paralyse instead of facilitate” medical research in Finland.

“A confusing conflict between individual and common interests is evident throughout the proposal: on the one hand, genomic data is to be produced and compiled into a single location for research and innovation activity, but, on the other, the draft bill lays out limitations and requirements regarding health-related analyses,” it highlighted.

“These place an emphasis on a need for the analyses to be beneficial – even immediately – to the person examined, even though the proposal also states that the law seeks to promote the responsible, non-discriminatory and secure use of genomic data in healthcare.”

“Scientific research is only rarely able to produce immediate health benefits to the person examined,” reminded Duodecim.

It added that the possible benefits to patients are undermined particularly by the requirement that genomic data be stored separately from patient records, in a dedicated database. “It is absolutely clear that this does not enhance the current and future possibilities to administer individualised care where genomic data is used in daily clinical work.”

The Genome Centre Finland would, according to the proposal, operate as an independent division under the National Institute for Health and Welfare (THL), providing expertise on processing genomic data and conducting health-related genomic analyses.

It would be tasked with maintaining and managing a national genome database for data produced by biobanks and other service providers.

Aarno Palotie, a professor at the Finnish Institute for Molecular Medicine (FIMM), echoed the concerns of Duodecim.

“In general, the proposal for a new genome law would in its currently form substantially limit rather than promote research. It is an outright threat to wide-ranging genomic research. If carried out like this, it will restrict the accumulation and use of genomic data so much that the need for a genome centre will be called into question,” he said.

UPDATE: This story was updated with the quote from professor Aarno Palotie.

Aleksi Teivainen – HT
Source: Uusi Suomi