Personal data is big business - and nothing is more personal than our genetic blueprint.
The State has invested over €70 million in private company Genomics Medicine Ireland (GMI) who aim to collect the DNA of 400,000 volunteers. This is the genetic material of almost one in every ten people in Ireland.
Since this announcement, concerns have been raised by scientists about this investment in a private genome sequencing programme rather than a publicly-funded initiative. There are a number of such public projects across the world including the UK Department of Health’s 100,000 Genomes Project and the National Institutes of Health’s All of US project in the United States.
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”.
There are also issues about access to Irish data by researchers. A recent decision by the Health Research Consent Declaration Committee (HRCDC) included the condition that Genomics Medicine Ireland (GMI) and Beaumont Hospital make the genomic data collected during a health research project publicly available.
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.
HELP US INVESTIGATE
We want to find out why a private rather than public initiative was funded to sequence Irish genomes.
We want to investigate what is being done to protect Irish genomes and data privacy in terms of genetic material and if policies are being developed in this area.
We want to find out whether Irish genetic data will be publicly available for scientists to research.
Have you any information that you think would help this investigation, contact us at [email protected]
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