Live campaign: Genomics Medicine Ireland
GMI Campaign: context
What is GMI?
Founded in 2015, Genomics medicine Ireland (GMI) is an Irish life sciences company. There aim is to sequence the genomes of one in every ten people in Ireland. This includes people that have complex conditions as well as healthy volunteers.
Why should we be concerned?
In 2018, GMI were acquired by a Chinese genomics company called WuXi Nextcode. The same year, and as part of an effort to turn Ireland into a leader in the life sciences, the government of Ireland invested $70 million in GMI.
WuXi Nextcode’s links with the Chinese government has led to concerns about where the genomic data collected from Irish citizens is being stored, and who has access to it.
Genome sequencing has great potential, it could hold the key to improving our understanding of a range of diseases. GMI are collecting the genomic profiles of millions of Irish citizens. Genome sequencing at this scale, by a commercial entity, demands the highest levels of transparency. Not only when it comes to how genomic data is shared, with whom, but crucially, the nature of GMI’s long-term goals.
At present, the genomic and health data that Genomics Medicine Ireland are collecting from Irish citizens is being shared with pharmaceutical companies for a fee. The problem with the heavily commercial approach GMI are taking is that it doesn’t lend itself to the much-needed transparency about how data is shared or, indeed, GMI’s wider goals. In 2019, the genome profiles of 1,500 people were transferred from Ireland’s largest paediatric hospital to GMI without the appropriate consent - which has prompted an investigation that is currently underway.
What we are campaigning for?
We’re campaigning for a ‘New Social Contract for Genetic Technologies’ in Ireland
This social contract will exist between the government of Ireland, genetic technology companies such as GMI, and the public.
The social contract will set out a framework for how decisions about genetic technologies are made. This would support greater regulation, and more public-centered policy decisions.
If you would like to contribute to this campaign, or merely share your opinion, then please contact us.
A ‘New Social Contract for Genetic Technologies’ in Ireland
A ‘New Social Contract for Genetic Technologies’ in Ireland it would require genetic technology companies, such as GMI, and the government of Ireland to pledge 1% of their expenditure for genetic technologies (1% of R&D in the case of genetic tech companies) on the following:
Awareness-raising campaigns, which should include a coordinated national and ongoing effort to educate the public, so that the public voice is properly informed when deciding how these technologies are used
Workshops which bring the debate to life in schools, colleges, and universities – free to participate, and facilitated online for wider access
Television and online campaigns and programmes featuring some of the brilliant minds that work both within the field and outside of it, which have the potential to capture the attention of the public, inspire them, and ultimately get them ‘up to speed’
GMI Ireland: articles and links
Genomics Medicine Ireland rebrands as Genuity Science
The Times
We have to act now before our genetic code falls into private hands to be used for profit
The Journal.ie
Ireland’s national genome project should not be in private control
The Irish Times
Key developments and Campaign updates -
4th October 2020 - Investigative journalism platform, Noteworthy, publish report about Genuity
Key points:
This comprehensive investigative report, sheds light on the highly commercial nature of genomic data collection in Ireland
It shows there is a lack of clear regulation in the area of genome sequencing
It makes a compelling case for a Government review of Genuity’s operations in Ireland, and for the Government of Ireland to adopt a national genomics strategy
28 June 2020 - Genomics Medicine Ireland rebrands as Genuity Science
Key points:
Parent company WuXi NextCODE will restructure its operations and governance to complete a separation from its Chinese operations.
It expects to cut legal and financial ties with Shanghai later this year.