edps Reijo Aarnio criticized biobanks and Finnish genetic data to study the Finngas-project transparency.
Yle A-studio and MOT-delivery are sorted out Finnish biobanks and FinnGenin activity.
Biobanking collected Finnish blood, cell and tissue samples. Biobank donate samples and those aggregated health data for research and product development projects. The samples will be handed over without any identifying information.
yle of the study on the basis of the biobank have been released by the Finnish information at least more than a hundred partially or completely commercial project. In spite of all the biobank do not tell the sample to be given consent forms that they hand over the information also product development.
data protection ombudsman Reijo Aarnio keep the situation as problematic.
to See this legal basis, which we in this situation we analyse, it is very problematic. Of course, medications can be developed, data protection allows it. But it is this one problem, if the intended use is very far away from each other.
One of the largest ongoing research projects is Finngas, with the development of scientific research in addition to corporate business.
“we still Have to ask, whose project this is,”
the edps has launched a survey Finngas project.
Finland’s largest genetic research analysed half a million Finnish genetic and health information. The aim of the project is to disease mechanisms, better understanding and new therapies development.
the Project has involved academic researchers, in addition to the nine international pharmaceutical companies.
aarnio, the project involves a number of ambiguities.
–currently, there is a major investigation launched project transparency.
the edps has sent Finngas-project promoter may request, which contains 25 open-ended questions.
the Questions related to, among other things, who gets to analyze the Finnish data Finngas-project framework.
– it’s such a classic basic data protection issues. But the key is that we have still to ask, whose project this is, Aarnio said.
Two years ago, commenced Finngas project has been analyzed already more than 180 000 Finnish samples.
FinnGenin scientific director of Aarno Palotie according to the ambiguity is not. Finngas has provided answers to the supervisor questions.
– We will work with our current legislation under the. We have a big pile of the industry’s top lawyers watching, that all things should be right. We have used the data protection supervisor in the office involved, how Finngas-the project should build. We have been there for instructions, and acted according to them.
Read more:
many of the Finnish gene pool has been able to end up with the drug companies for analysis without their knowledge – thus the genetic information of the merchandise
the Topic deals with A studio TV1 at 21. As a guest FinnGenin scientific director Aarno Palotie and HUS:in administrative chief, health law professor Lasse Lehtonen.
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