Dáil Éireann Debate, Tuesday - 24 July 2018
1835. Deputy Brendan Howlin asked the Minister for Health if his attention has been drawn to the national public genome projects in European countries such as Finland, Denmark, Estonia and England; the work undertaken to assess the impact of an Irish public genome project (details supplied); and if he will make a statement on the matter. [35248/18]
Amharc ar fhreagra1836. Deputy Brendan Howlin asked the Minister for Health if his attention has been drawn to the fact that 16 EU Ministers for health signed a declaration in Brussels in April 2018 to pursue a public project to sequence 1 million European genomes; the reason Ireland did not participate; and if he will make a statement on the matter. [35249/18]
Amharc ar fhreagraI propose to take Questions Nos. 1835 and 1836 together.
I am aware that Genomic research and Genomic medicine, as a field, has the potential to change the way we prevent, manage and treat disease. Dramatic advances in our understanding of the molecular basis of human physiology and disease over the last decade have yielded enormous insights that may offer new and better ways to improve health and tackle disease. My Department is aware of the developments across Europe and Internationally and are monitoring advances in this area.
I am also aware that around the world Governments and other public funders are actively engaged in discourse and initiatives to consider how best to progress population-based genomic sequencing projects and the advancement of genomic medicine. This includes the need to better understand the value proposition for healthcare systems and patients, the rationale for public and private investment and clarity regarding roles, responsibilities and governance issues. Evidence regarding costs, cost effectiveness and financial sustainability, legal and ethical considerations, implications for bio-banking and data infrastructure and public acceptability issues that accompany the joint pursuit of health and commercial interests are also important.
My Department and the Health Research Board, is aware of the opportunities that exist in this area and the issues that arise and are considering this as part of a broader based R&D strategic approach for the health system. An important part of my Department’s priorities in this overall context relate to the introduction of a national biobanking policy, which is currently being considered within my Department. This would include membership of important European Research Infrastructures such as “Biobanking and BioMolecular Resources Research Infrastructure” (BBMRI) and the European Clinical Research Infrastructure Network (ECRIN). The introduction of a new Internationally Recognised Standard (ISO) which will govern the collection, curation and storage of human biological specimens will also be valuable in contributing to this national infrastructure. The issue of establishing a national, harmonised system for research ethics approval is also being looked at. Work is being advanced on Regulations, aligned with GDPR, for the processing of identifiable data for the purposes of health research to ensure that patients maintain confidence and trust that their information is used in a sound, ethical and secure manner. Consideration of a national approach to personalised medicine, a key issue in this context, is also under consideration.
As the Deputy points out a number of EU countries signed a political declaration 'Towards access to a million genomes in Europe’ or the MEGA Project last April.
While I am supportive of this initiative and welcome the over-arching aims and goals it is important to note that Ireland's national policy in relation to personalised medicine, genomics and biobanks more broadly is under development and it was decided it would not be timely for Ireland to sign up to the initiative in April. I will however keep the matter under review.
