Summary
In 2022, following the success of our Citizens’ Jury on Access to Health Information, IPPOSI presented the Irish public with an opportunity to share their perspective on the future use of genomics in health care and research in Ireland.
The full jury report at the link above sets out the 22 recommendations proposed by the 24-person jury, as well as the key themes, concerns, and expectations expressed during their 16 hours of deliberations. A shorter summary version of the verdict report is available for download at the link below.
The IPPOSI Citizens’ Jury was delivered in partnership with the RCSI University’s Public Patient Involvement (PPI) Office who organised and facilitated an in-depth discussion of the citizens’ jury verdict via a follow-up workshop that took place on 3 November 2022.
Why Genomics?
Thanks to important breakthroughs in science, as humans, we are able to learn more and more about our human genome (the complete set of DNA that makes up our individual bodies). We can use this genomic information to improve our health as individuals, and by collecting this information at the population level, improve the health of our society. But this information belongs to people, and those people should have a say in how genomic information should be used in Ireland for health care and health research.
The jury explored to what extent we should increase the use of genomics in our health care and health research, the challenges and opportunities that may arise as individuals and as a society, and the safeguards that need to be put in place to balance the benefits and the risks.
The jurors
The jurors were randomly selected from the 500+ expressions of interest we received as part of a public recruitment process. The random selection process identified 25 jurors based on an algorithm developed by a team of computer scientists at Trinity College Dublin (TCD) which considered the Central Statistics Office (CSO) census figures for gender, age, location, ethnicity, and education.
We would like to thank all jurors for their commitment to the process.
The facilitators
The 25 members of the jury (‘jurors’) met for over 16 hours across four weeks in June – first coming together to hear from nine witnesses over four online evening sessions (7, 9, 14, 16 June), and then meeting in person in Dublin for one day of deliberations (25 June).
We would like to thank all the people who gave their time to support the jurors – including Dave Dunn (independent facilitator), June Shannon (independent rapporteur), Lorna Kerin, Michael Foley, Laura Brady, Una McInerney, Mandy Daly, Liadain von der Decken, Steve Burke (independent small group facilitators), as well as our independent oversight panel (see below).
The witness testimony
The jury members were provided with ‘testimony’ from expert ‘witnesses’ to ensure that they would have a range of perspectives to consider in arriving at their verdict. This approach allows jurors to make ‘informed recommendations’ which we hope will influence health decision-makers to take their verdict ‘under strong consideration’ when deciding the direction of travel for legislation, policy, and practice around the future use of genomics in health care and research in Ireland.
The Oversight panel
The jury process is conducted independently of IPPOSI. We have an independent facilitation team, independent rapporteur, and most importantly, an independent oversight panel advising on each of the steps throughout the jury preparation and implementation process. The oversight panel provides a wide range of expertise from medicine, academia, research, patients, and citizens. The panel ensures that the jury mission and the jury design are relevant, accessible, and appropriate. All the materials prepared for the jury are reviewed by the oversight panel in advance. The panel meets monthly throughout the process, and a sub-group convenes to review material for bias.
Data Protection
A Data Protection Impact Assessment (DPIA) was prepared in advance of the jury process to ensure that IPPOSI processed personal juror information in an appropriate and transparent way. The assessment details the type of data that is collected, the timelines for retaining this data, and the processes in place for data destruction. The DPIA is accessible here. It identifies a number of risks that are summarised in the DPIA text. The safeguards put in place to mitigate the risks are also summarised in the DPIA. For more information on IPPOSI’s Privacy policy, click here
Funding & Partners
IPPOSI receive funding from the public sector (through the Dept. of Health, via the Health Research Board) and also from the private sector (through industry membership fees and unrestricted grants). Like many patient organisations in Ireland, we work with the support of industry grants to complete various projects. It is simply not possible to do all the things we need and want to do from the limited public funds we have applied for and receive.
The 2022 IPPOSI Citizens’ Jury was funded from IPPOSI reserves as well as from unrestricted grants from the following partners:
Irish Society for Human Genetics
Roche (Ireland)
Pfizer (USA)
The jury is being delivered in partnership with the RCSI University’s Public Patient Involvement (PPI) Office who are organising in-depth discussions of the citizens’ jury verdict via a series of follow-on workshops with diverse population-based groups. These workshops are funded by the Health Research Board.