SELLING OUR GENES: Should the Government be funding a private company to collect 400,000 Irish people’s DNA?

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Concerns raised in the Dáil today about the opt-out process for a genomics study is one example of why our colleagues noteworthy_ie want to investigate the issue of data privacy when it comes to genetic material. (Find out more:

The State has invested over €70 million in private company Genomics Medicine Ireland who aim to collect the DNA of 400,000 volunteers. This is the genetic material of almost one in every ten people in Ireland.

In spite of the Government’s investment in private sequencing, it chose not to participate in the EU programme, 1+ Million Genomes. This was set up and signed by 20 member states to provide “access to at least one million sequenced genomes in the EU by 2022”. However, it is not yet clear whether a private DNA-collecting company would normally have to operate under this condition of disclosure so useful data could remain out of the public realm and inaccessible to many researchers.We want to find out why a private rather than public initiative was funded to sequence Irish genomes.

 

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noteworthy_ie Opt out, the dirty bastards!

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