Irish Platform for Patient Organisations, Science & Industry

IPPOSI is pleased to announce the official launch of a Public Education Programme on Genomics! 

The exploration of the human genome is one of the defining medical ethical issues of our time. It has the potential to improve and save countless human lives.  But it doesn’t come without risk!  

As genomics enters the Irish public’s eye, there is a recognised need to educate the public in Ireland about the relationship between genomics, health, and disease 

Why Now? 

The programme is in response to the verdict of the 2022 Citizens’ Jury on Genomics and the appetite displayed by the Irish ‘health-interested public.’ People want to become more involved in decisions that are made on their behalf, but currently often without their input. The jurors called for “an inclusive public engagement plan to increase literacy and explore perspectives around genomics.” 

It is timely because both the science and its ethical implications have entered the public consciousness, especially with direct-to-consumer marketing of tests, popular media coverage as well as the ongoing work to develop & implement a National Strategy for Genetics & Genomics in Ireland. 

The programme 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. 

  • 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.
  • A national strategy on genetics & genomics is being published on December 13th, 2022.  More information on how the strategy was developed by the Strategic Programmes Office of the HSE is available on the HSE website here.
  • Well-informed citizens/members of the public will have a key role to play in the design and implementation of these national-level genomics-based approaches to healthcare and research.  
The Programme 

The programme will deliver ‘mini-courses’ to three different public audiences and aims to build the capacity of members of the public by providing educational information about the relationship between genomics, health, and disease. The mini-courses will be one-day events. Details on how to apply for the course will be published in 2023.  

Funding  

This programme has been made possible by 50% part-funding from the Health Research Board under a 2022 Knowledge Translation Grant (more information here).  And 50% part-funding by unrestricted grants from the following IPPOSI industry members: AstraZeneca, BioMarin, GlaxoSmithKline (GSK) Ireland, Novartis Ireland, Pfizer Ireland, and PTC Therapeutics.

If you have any questions related to the programme, please email jmoran@ipposi.ie 

5 December 2022
 

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