Perspectives of the Irish public on the use of their genetic data for research
26th July 2022
We were honoured to host our 7th and final instalment of the Your DNA Your Say Seminar Series with the Irish team.
Genomic medicine and research are at an important intersection in Ireland. A National Genetic and Genomic Strategy is under development, and this should guide the implementation of genetic and genomic medicine and research in Ireland. To ensure support for any such policy, it is essential that the views of patients in Ireland inform its development.
In this seminar, Dr Ciara Staunton, Senior Researcher at the Institute for Biomedicine, Eurac Research, discussed the results of a survey of 1000 participants in Ireland about their views on the use of their genetic data in research. In particular, she highlighted concerns they have about potential harms, who can access their genetic data for research, and their preferences on the governance of their genetic data. Vicky McGrath, CEO of Rare Diseases Ireland, responded to these findings and what they mean for patients with rare diseases in Ireland.
There are an estimated 300,000 people in Ireland living with rare conditions. With over 6,000 identified rare diseases, of which 72% are genetic in origin, genetics and genomics are key to both care and innovation for this underserved community.
People living with rare conditions in Ireland are spending years seeking a diagnosis. A recent survey by Rare Diseases Ireland revealed that 37% or respondents were waiting over 5 years for a diagnosis with 53% of respondents being investigated and treated for 3 or more rare conditions and 73% seeing 3 or more consultants with different specialisms on their diagnostic journey. The burdens of this diagnostic odyssey on the individual, their family and the healthcare system as a whole are enormous.
Genetics & genomics is a tool that can help to reduce this burden by shortening the diagnostic odyssey and providing a definitive answer. 77% of respondents who had access to genetic services received a diagnosis through this pathway. Genetic diagnosis provides those living with rare conditions the opportunity to get involved in research and to access new and novel therapies. It provides families with opportunities to manage risk, plan future pregnancies and network with families with a similar diagnosis.
Watch the full seminar here: