Ireland needs a national genomics programme but so far has failed to engage
Ireland continues to lag behind other developed countries when it comes to genomics medicine and Irish patients are losing out. With the right investment and partnership between public and private sectors, we have an opportunity to become a leading healthcare provider in personalised healthcare.
Genomics is the study of all of our genes – the DNA contained in the cells of our body that acts as a blueprint for every human being. Studying our DNA can help us understand our risk of developing certain diseases, predict our response to medications and other treatments, and assist with the development of new treatments.
Genomics research has the potential to provide treatments for conditions currently regarded as incurable such as multiple sclerosis and to yield significant savings for the Irish health service. Faster diagnoses and earlier detection of disease would enable clinicians to intervene earlier and make better informed, targeted therapeutic decisions improving patient outcomes, reducing hospital stays and reducing the Health Service Executive’s annual medicines bill.
Unfortunately, Irish patients are at a disadvantage to their counterparts in other countries as a result of the Irish health system’s failure to engage meaningfully with genomics medicine. However, we must be realistic in relation to our expectations in this regard. Genomics Medicine Ireland is currently building a research genomic database which will include data from some 400,000 individuals in Ireland, both from healthy participants and patients suffering from up to 60 different diseases. This is an extremely expensive endeavour and it will cost between €500 million and €700 million to establish this population-scale database.
Funds on this scale are simply not available to the Irish health service at present. The solution lies in private-sector funding and involvement. Public-private approaches to medical research are the norm across developed societies, as they enable faster, more cost-effective, actionable results. This is true of genomic research initiatives internationally. The Genomics England project, which to date has been largely funded from the public sector, states that it will require the involvement of commercial companies from an early stage to achieve its aims; similarly, Finland’s FinnGen has nine commercial partners.
Our business model is not dissimilar to these projects, which are often cited as the best way of introducing genomics to the healthcare system. It is worth noting, also, that GMI is an independent, wholly-owned subsidiary of the privately-held multinational company WuXi NextCODE, headquartered in Boston. The ownership of WuXI NextCODE is shared by a wide range of international investors, and despite the name we are not a Chinese company, as is often assumed.
Participation in GMI studies is entirely voluntary and undertaken with informed consent which clearly sets out to the participant how the data will be used, stored and accessed. Our studies are independently approved by ethics committees in the hospitals/clinics and the genomic, health and clinical data we collect is stored on secure servers in Europe in compliance with GDPR and HRR regulations. This data is anonymous to the user, contains no personal identifiers (such as name address, or date of birth) and cannot be downloaded.
Patient benefit is our foremost priority, and we will deliver value in two ways. First, the database is funded by pharmaceutical companies who will have a short period of exclusivity to develop new, ground-breaking drugs and therapies. There will then be a broader data access licensing programme whereby we will open up the database for research and clinical interrogation by researchers. Our aim is to integrate knowledge and insights in the database into the healthcare system, enabling personalised medicine.
We are already working with our Irish clinical and research partners and returning datasets from their patients for their own research initiatives. GMI has also established a rare-disease research programme in conjunction with Temple Street Children’s University Hospital, which provides free access to whole genome sequencing to children and their families with undiagnosed disorders.
A genetic diagnosis can mean access to new or more appropriate treatments, more specialised and co-ordinated care and a better understanding of what the future may hold for both the child and their family. Symbiotic relationships such as these will generate additional research, foster the creation of new genomics and life sciences start-ups, and create increased employment and the development of an international genomics hub within Ireland.
Ireland needs a national genomics programme and GMI looks forward to making a positive contribution to it. Other countries are taking a lead in genomic research and Ireland is falling further behind with each passing year. GMI’s investment is helping, but it is now time for the Department of Health and other stakeholders including the research community and the private sector to partner in developing a coherent genomics strategy for this country. The opportunity to become a leader is now.
Anne Jones is chief executive of Genomics Medicine Ireland