Ireland sees a push for a national, public genome project

Ireland has become the latest country making a push for a nationwide public genome project.

This push came as a deadline approached for say in how donated brain tissue samples could be used. Over the years, Irish people have donated brain tissue samples for research, and a deadline in June, 2020 was set for those donors to decide if the DNA extracted from the samples could be used in ways not originally consented to when the sample was given.

Currently, a private company called Genomics Medicine Ireland is in the midst of an effort to sequence 100,000 genomes from volunteers in Ireland. The company plans to target up to 60 major diseases in the research program. The research will be the foundation of a database to help drug companies better target treatments.

In 2018, Genomics Medicine Ireland was acquired by Chinese company WuXi NextCODE as part of a $400 million investment, reported Fierce Biotech. WuXi said it would commit $225 million in investments to Genomics Medicine Ireland as the company looks to create as many as 600 new jobs by 2023.

Ireland is ideal for a genomics project, WuXi stated, because:

• It has a relatively homogenous population, which makes key genes easier to identify
• The population is large enough to have both common and rare diseases present in significant numbers
• There is an existing network of high-quality research and healthcare facilities
• Similar research programs have seen high participation rates among the population

AbbVie partnered with Genomics Medicine Ireland for the project.

“By building a library of genetic information, scientists will look for genes that might play a role in disease origins and progression,” the company said in a press release. “The hope is to make discoveries that will lead to new medicines for people battling serious diseases.”

But the partnership with WuXi drew criticism from within Ireland. As the Irish Times noted, the genetic material and findings made by the company would remain its property and were made under the guise of free health and fitness testing.

“That’s ‘free’ in the same sense as services from online platforms are ‘free,’ the Irish Times said in an article in late 2019. “Google gives you ‘free’ search; Google then extracts an endless flow of revealing data points about you and earns billions by profiling you and selling your data to third parties. Unlike public genome projects, private genomic research is about making money for a private company, either through finding treatments with third party partners (often extremely expensive) or selling multimillion-euro access to those valuable databases.”

The creation of a national, non-profit, openly transparent national genomics project would wedge ethical and procedural control into the business of collecting genetic information.

“Like other modern nations, we absolutely must implement a not-for-profit, operationally transparent national genomics project that takes private companies wishing to sell our (lucrative) DNA out of the genomic driving seat, and gives ethical and procedural control back to the nation, for projects to benefit the public good,” stated an opinion piece in the Irish Times.

Ireland took a step in that direction with the creation of the Health Research Consent Declaration Committee, which got underway in 2018. The committee is part of an effort to empower patients who seek ownership over their medical records, but the organization is also able to step in and make broad decisions during certain circumstances when consent is not possible.

But the need for a national program remains.

“We lack a national public genome project (something that Genomics Medicine Ireland says it supports) to offer such oversight, management and researcher support, and the necessary leadership for any commercial collaboration,” the Irish Times stated in June. “It is not the norm for private companies to have sole control of large national DNA databases, as is our current, evolving situation. As political parties in Ireland come together to hammer out a programme for government, the creation of a national public genome project, and a fix for our alarming shortfalls, should by a deadline priority for all.”