Irish Platform for Patient Organisations, Science & Industry

Jury duty with a difference!

IPPOSI is seeking a jury of 25 people broadly representative of the Irish population to join our Citizens’ Jury* on Future Use of Genomics in Ireland.

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.

During the month of June 2022, the 25 members of the jury will meet for several sessions chaired by an independent facilitator. In these sessions, jurors will have the opportunity to hear testimony and cross-examine witnesses who are experts in the field of genomics, but also in the related areas of medical care, ethics, and law.

The jury will examine such areas as how genomic information can improve our health as individuals and as a society, to what extent we should support the increased use of genomics in our health care and health research, the challenges and opportunities that arise from doing so, and the safeguards that need to be put in place to maximise progress while containing the risks.

The jury verdict, once announced, will be discussed in-depth via a series of follow-on Deliberative Dialogue workshops with diverse population-based groups organised by the RCSI University’s Public Patient Involvement (PPI) Office, in September 2022.

*The term ‘Citizens’ Jury’ reflects the wording established by the Jefferson Center (USA) when originally designing this method of public consultation. IPPOSI are happy to welcome any and all adult members of the public residing in the Republic of Ireland to our jury.

Frequently Asked Questions

Who can become a member of the Citizens’ Jury on Genomics?

Anyone over 18 years of age living in the Republic of Ireland is welcome to apply to join our Citizens’ Jury. You just need to complete our short questionnaire to express your interest. We will contact you in April 2022 to let you know if you are one of the 25 jurors offered a seat on our jury. You can then decide whether to accept our invitation.

How can I apply to become a juror?

To apply, simply complete the short submission form here or via the blue button above.

How will jurors be selected?

Successful jury applicants will be randomly selected through an independent process overseen by an academic expert in data protection, informatics, and ethics, to ensure representation from a cross-section of the Irish population on the final jury.

When and how will the jury take place?

The Jury will take place in June 2022. The process will likely be conducted using a hybrid approach, with some sessions taking place online and one or two deliberative sessions taking place in person. In May 2022, to prepare, jurors will have a technical check and a short briefing with the jury facilitator.

Will jurors be compensated for their participation?

Successful jurors will be provided with a gratuity as a token of appreciation for their participation in the jury. Jurors will receive €400 for their participation in the jury: €25 on day one and €375 on the final day.

Has a Citizens’ Jury been done before?

In 2021, IPPOSI designed and delivered our first Citizens’ jury on Access to Health Information, based on methodology from the Jefferson Center (USA). To learn more about this Jury, click here.

Who is overseeing this process?

The IPPOSI Citizens’ Jury on Future Use of Genomics is guided by an independent Oversight Panel, made up of the following representatives:

  • Prof. Gianpiero Cavalleri, Professor of Human Genetics, RCSI University of Medical and Health Sciences; and Deputy Director, FutureNeuro
  • Dr. Aisling de Paor, Law Firms Liaison Officer and INTRA Coordinator, School of Law and Government, Dublin City University
  • Sara Hurley, 2021 IPPOSI Citizens’ Jury member
  • Dr. Avril Kennan, CEO, Health Research Charities Ireland
  • Anne Lawlor, Founder & Chairperson, 22q11 Ireland Support Group
  • Prof. Mark Little, Professor of Nephrology (Clinical Medicine), School of Medicine, Trinity College Dublin
  • Dr. Sally-Ann Lynch, Consultant Clinical Geneticist, Children’s Health Ireland (CHI) at Crumlin & CHI at Temple Street
  • Dr. Teresa Maguire, Director of Research Strategy and Funding, Health Research Board
  • Vicky McGrath, CEO, Rare Diseases Ireland
  • Kevin Molloy, 2021 IPPOSI Citizens’ Jury member
  • Dr. James (Jim) O’Byrne, Consultant Physician, National Centre for Inherited Metabolic Disorders, Mater Hospital
  • Dr. Emily Vereker, Programme Manager, Secretariat, Health Research Consent Declaration Committee (HRCDC)

Will my data be protected?

As the data controller for the Citizens’ Jury on Genomics, IPPOSI has performed a Data privacy impact assessment, the latest version of which is available for download by clicking here.

Who is funding this initiative?

The 2022 IPPOSI Citizens’ Jury on Future Use of Genomics is supported by a combination of IPPOSI resources as well as unrestricted grants from two IPPOSI Industry members – Pfizer and Roche. The follow-on deliberative dialogue workshops run by the RCSI PPI Ignite office are supported by the Health Research Board.

18 May 2022
 

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