The public are being invited to become members of a Citizen’s Jury which will deliver a verdict on the future of genomics in Ireland and help shape future regulation in this field.

Organised by the Irish Platform for Patients’ Organisations, Science and Industry (IPPOSI), in collaboration with the RCSI Public Patient Involvement Office, the jury will be guided by an independent oversight panel made up of representatives from Rare Diseases Ireland, Health Research Charities Ireland and the RCSI University of Medical and Health Sciences.

A jury of 25 people broadly representative of the Irish population is being sought to deliberate on this topic and to deliver a verdict that will be presented to Government and policy makers in order to help shape future regulation in this area.

During the months of May and June, jury members will meet for a number of sittings chaired by an independent facilitator. They will have the opportunity to hear testimony and to cross examine witnesses who are expert not only in the field of genomics, but also in the related areas of medical care, ethics and law.

The jury will examine how genomic information can improve our health as individuals and as a society. It will also look at to what extent we should support the increased use of genomics in healthcare 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 risks.

Once announced, the jury verdict 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.

Applicants must be over 18 and those who are successful will be randomly selected through an independent process overseen by an academic expert in data protection, informatics and ethics. This is to ensure that a cross section of the Irish population is represented on the final jury. 

“The human genome is the blueprint for our bodies. Made up of DNA, no human genome is the same and tiny glitches in that DNA can give rise to serious illness and disability. Developing genomic medicine that is specific to a person’s DNA can have a transformative effect on their lives and future health and wellbeing, as well as for wider society.

“However, we do need to take steps to maximise the societal benefits and to minimise the risks that come with genomic research in Ireland and to ensure that the appropriate structures and guidelines are in place so that everything we do benefits us collectively as a society,” commented IPPOSI board member and consultant neurologist, Prof Orla Hardiman.

She noted that as a doctor and scientist, she has seen the benefits of genomic research, but she insisted that as a society, “we need to understand what the best approaches are that will allow us to conduct meaningful research that benefits everybody”.

“It’s important that we hear from the Irish people about what they are comfortable with when it comes to giving consent for genetic research and the types of information that is needed to understand how their genetic data will be used,” she said.

According to Derick Mitchell, CEO of IPPOSI, genomic research is a double-edged sword and it is important that Government and policy-makers listen to the views of the public.

“There are many challenges around genomics. Notwithstanding these, many of IPPOSI’s members living with chronic and rare diseases believe that if we get it right, it offers the potential for scientific and medical breakthroughs that will enable patients to receive a quicker diagnosis and a treatment plan that is personalised to them.

“However, it is also the case that genomics can potentially be used for other less altruistic purposes. Conceivably, employers, banks, insurance companies and businesses could use this information to discriminate against one person over another in the provision of services,” he noted.

He said that exploring public opinion will allow for a greater understanding of the opportunities and challenges presented by genomics.

The closing date for applications to the Citizens’ Jury is March 23. For more information, click here.