A citizen jury of 25 people is being sought to consider how should genetics be applied and regulated with a view to improving health outcomes in the Irish population and providing oversight.
While the human genome has the potential to be used to improve and save lives, deploying genomics and gene technology in treatment and research is one of the most challenging medical ethical issues facing regulators and governments, as it is not without risks.
To consider how future regulation should be shaped, the Irish Platform for Patients' Organisations, Science & Industry (IPPOSI) in collaboration with Royal College of Surgeons in Ireland (RCSI) Public Patient Involvement Office, is attempting to reach a verdict through a group broadly representative of the Irish population. It will be presented to the Government and policymakers to help shape future regulation.
Members of the public will be invited to hear arguments for and against, and to deliver judgment. They will be guided by an independent oversight panel with representatives from Rare Diseases Ireland, Health Research Charities Ireland and RCSI University .
The initiative was an opportunity to seek the public's views on an area urgently needing robust oversight, said IPPOSI board member, said Prof Orla Hardiman.
“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,” she said.
There was a need to maximise benefits and to minimise risks that come with genomic research and to ensure appropriate structures and guidelines are in place “so that everything we do benefits us collectively as a society”, said Prof Hardiman.
“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 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 added.
IPPOSI is a patient-led, non-profit alliance of 105 patient organisations, more than 250 scientists and 23 companies that work together to improve lives of people with a chronic and/or rare disease.
Its chief executive, Derick Mitchell, said genomic research was a double-edged sword, while the Government and policymakers needed to consider 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.”
Genomics could also potentially be used for other less altruistic purposes, he acknowledged. “Conceivably, employers, banks, insurance companies and businesses could use this information to discriminate against one person over another in the provision of services.”
Safeguards
They wanted to explore opportunities presented by genomics, as well as 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?”
Potential jurors do not have to have a science or medical background, or know anything about genomics. During June 2022, jury members will meet for 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 areas of medical care, ethics and law.
The verdict, once announced, will be considered in follow-on deliberative dialogue workshops during September. To be a member of the jury, people must be over 18 and living in the Republic. 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 population.
For further information and to make an application, visit ipposi.ie – the closing date is Wednesday March 23rd.
