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.