Opinion: Why has the State invested €70m in a private company to look at our genetic data?

Dr Ciara Staunton GENOMIC MEDICINE IS enabling scientists to map out our genetic code which may help them better understand some diseases and medical conditions that affect us.

Ireland too has decided to invest in genomic medicine. Rather than ensure that this investment is in a manner that best serves the Irish public, €73.5 million was given to Genomic Medicine Ireland , a company owned by the Chinese pharmaceutical company WuXi with zero public ownership, to sequence the genomes of 400,000 Irish people.

The sharing of data for research is seen as important in the success of genomic research. However access to this data will be determined by a commercial entity who will make decisions based on their commercial best interests and not the best interests of the Irish public, despite the considerable public investment.

It is unclear what level of information and engagement the participants are given. Importantly it is unclear whether they are aware that a commercial entity now has their data and may opt to sell their data to another commercial entity. This ensures that public concerns are identified and addressed and that there is public trust in the endeavour. Generally there is strong involvement from patient groups and the general public at the outset, that continues right through the research cycle to the integration of genomic medicine into the public health system.The Irish government has failed on this front.

How were these 400,000 Irish genomes obtained? Was patient consent obtained? Explicit or otherwise? Who owns the copyright and patentable rights in the genetic data of the 400,000 Irish people who may not even be aware that their genetic data has been misappropriated?

Who is in charge? Who signed off on this? These people need to be known and accountable for throwing state money.

Why is this being outsourced to China, very concerning.

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