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Educating the Irish Public on Genomics

The exploration of the human genome is one of the defining medical ethical issues of our time. It has both the potential to improve and save countless human lives, but doesn’t come without risk. As genomics enters the Irish public’s eye, there is a recognised need for efforts to educate the public here in Ireland about the relationship between genomics, health, and disease. It is timely to provide this education because both the science and its ethical implications have entered the public consciousness, especially with direct to consumer marketing of tests and popular media coverage. Ireland currently lacks a national policy and infrastructure to harness the power of genomics. However, thanks to a number of recent national-level initiatives in research and healthcare, genomics is starting to ‘become real’ for the Irish citizenry. Well informed citizens/members of the public will have a key role to play in the design and implementation of these national-level genomic-based, approaches to healthcare and research.
By building a network, identifying accessible content, and engaging in multi-stakeholder dialogue, the KTA-supported activity will deliver a national-level public education programme, co-designed with patients, carers and advocates to ensure that it is designed to meet the needs of the Irish public. The programme will provide objective, comprehensive, scientifically reliable information to the general public around the use of genomics in healthcare and in research, among others.
The programme is in response to the appetite displayed by Irish ‘health-interested public’ (over 500 individuals applied to the IPPOSI Citizens’ Jury on genomics). People want to become more involved in decisions that are made on their behalf, but currently often without their input. It also positions Ireland at the forefront of innovative approaches to educate the public on genomics and more broadly in health research, digital health and health service innovation.