Irish Platform for Patient Organisations, Science & Industry

Having received an incredible 508 expressions of interest for the 2022 IPPOSI Citizens’ Jury on the Future Use of Genomics in Ireland, we are delighted to know that this is a topic that people want to talk about! Thank you to everyone who has expressed their interest!

Now we move to the next step in the process. We have reached out to each of the applicants to ask them to share a little bit more about themselves (gender, age, location, ethnicity, education). We do this so that our jury can be as representative of the population of Ireland as possible. Applicants have until Wednesday 30 March to get back in touch with us if they want to continue with the process.

After this, we are able to start the random selection process. To do this, we enlist the help of a team of academics based in Trinity College Dublin. This ensures that the selection is completed independent of IPPOSI by experts who have experience in data protection, informatics, and ethics. The Trinity team enters anonymised information about each applicant into a computer programme that uses an algorithm based on the latest census completed by the Central Statistics Office to identify a list of 25 jurors which reflects a cross-section of Irish society. By the end of April, we will have our jury members!

SO WE HAVE OUR JURY, THEN WHAT?

Well, this is where the real fun begins.

In May, we will take some time to introduce the jurors to each other and to the independent facilitator and rapporteur who will lead the jury process. Jurors will also be invited to attend two pre-jury information sessions to learn more about the topic of genomics. These sessions aim to provide factual and impartial information in order to get all of the jurors up to speed on the key issues and to familiarise them with key terminology.

In June, the formal jury process begins. Over several evenings, jurors hear from witnesses who each have a different perspective on genomics. Jurors are invited to ask questions of these witnesses, to probe their testimony, and to reflect together on the merits of the positions put forward. After hearing from all witnesses, jurors come together in person to deliberate and arrive at a verdict on how Ireland should (or should not) use genomics in health care and research in the future. The verdict will be presented to Irish policymakers by jurors later in 2022.

Why do we do this?

The response to our announcement about a second Citizens’ Jury on the Future Use of Genomics in Ireland has been overwhelmingly positive. People clearly believe that it is important for issues like these to be debated by the public, and they welcome the opportunity to be invited to do so.

We are very proud of our Citizens’ Juries. We feel they offer a space for citizens to speak where they would otherwise not have the chance. They are not a replacement for public consultation efforts, which should be (but are frequently not) carried out by the State. They are designed to kick-start or complement state consultation activities.

We believe last year’s Citizens’ Jury on Access to Health Information has helped to raise the profile of this important topic – both the benefits and the risks – and we are happy that we were able to contribute in some small way to more discussion happening in this space at the national level.

We hope this year’s Citizens’ Jury will be able to make a similar contribution to public debate around an important topic for now and for the future.

How can I stay updated about the progress of this Citizens’ Jury?

If you would like to receive updates about our Citizens’ Jury on Future Use of Genomics, sign up for our mailing list here.

More about IPPOSI…

IPPOSI is a patient-led, multi-stakeholder platform that tries to bring people from different perspectives together to see where common areas of interest and consensus lie. The majority of patient organisations in Ireland are members of IPPOSI.

We 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 us, many patient organisations in Ireland 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 received.

We are confident that while some of our activities are funded by industry (the Citizens’ Jury for example), our independence is never compromised. Our board is patient-led, our 2021 and 2022 Citizens’ Jury oversight panels are patients and academics, and our strongest (and most vocal) advisers are our patient members.

For the Citizens’ Jury, we have gone to additional lengths to put in place an independent oversight panel, an independent facilitation team, and an independent rapporteur. This means even our IPPOSI staff members are not actively involved in the Citizens’ Jury (outside of providing project coordination, administration, zoom etc).

To learn more about IPPOSI’s Policy on Financial Support by Companies, click here. You can also check out our Code of Conduct for Industry Members here.

18 May 2022
 

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