Have your say on the future of genome research

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

The role genomics can play in our lives, the opportunities and the challenges, is the subject of a forthcoming Citizens’ Jury in which members of the public are being invited to hear the arguments for and against, and to deliver their judgement.

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

Organised by IPPOSI, the Irish Platform for Patients’ Organisations, Science & Industry, 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.

During the month of June, 2022, 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 probe 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.

To be a member of the Citizens’ Jury, people must be aged 18 and over, and resident in the Republic of Ireland.

The successful 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. Jurors will receive a gratuity as a token of appreciation for their time.

For full information and to make application, visit www.ipposi.ie before the closing date of Wednesday March 23, 2022.

Social & Ethical Challenges

For myself, as CEO of IPPOSI, genomic research is a double-edged sword and it is important 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 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.

With this Citizens’ Jury, we want to explore public opinion around the opportunities presented by genomics, as well as the challenges that may arise from a social, ethical, legal, and practice point of view.

What rules do we need to have in place around how genetic information is stored, who can access it, whether the information can be deleted on request, and safeguards to protect it from getting into the wrong hands.

Blueprint for our Bodies 

Welcoming the initiative as an opportunity to seek the views of the public on an area that urgently needs robust oversight, IPPOSI board member, Professor Orla Hardiman said: “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 also 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.

“As a doctor and a scientist, I have seen the benefits of genomic research. But at the moment, 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 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. You don’t have to have a science or medical background or know anything about genomics to join the jury. We want you to come with an open mind.