Governance, access, and harms: perspectives of the Irish public on the use of their genetic data for research

Abstract

Background  After years of government inaction, Ireland’s first National Strategy for Accelerating Genetics and Genomic Medicine in Ireland was launched in December 2022. Research, innovation, and robust governance are identified as key to supporting a genomic service. It is critical that any policies developed to support the implementation of this strategy are informed in part by the views of the Irish public. The aim of this research is to explore the perspectives of the Irish public on the use of their genetic data for research.  Methods  The “Your DNA Your Say” project is a global exploratory project that is gathering public attitudes towards genomic data sharing. Between March and April 2022, 1005 members of the Irish public were anonymously surveyed to determine their views on the use of their genetic data and health data for research.  Results   Less than half of respondents were familiar with DNA, genetics, and genomics. There was a feeling that DNA and medical information should receive high levels of protection. Amongst the categories to whom the participants could share data, there are high levels of trust in the medical profession, and highest levels of willingness to share data with the medical profession. There were low levels of willingness for a separate individual or entity to decide on access. Overall, there is a consistent level of uncertainty with many respondents selecting “I do not know”, perhaps indicating the need for more information in this area.  Conclusion  It is critical that the Genomic Strategic builds upon the willingness to donate and provides ongoing and sustained funding to ensure trust of the Irish public in genomic research.