The Avondhu

Citizens’ jury on genomics

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Dear Editor,

I am writing to ask if readers of The Avondhu would be interested in participat­ing in a Citizens’ Jury to hear the arguments for and against genomics, and to deliver their judgement?

Most of us probably don’t think too much about genomics. However, the human genome is the DNA ‘blueprint’ for our bodies. Thanks to advances in our understand­ing of how it works, we now have the potential to improve and save countless human lives. With access to individual and collective genomic informatio­n, doctors will potentiall­y be able to give patients a quicker diagnosis and a treatment plan that is personalis­ed to them for particular diseases.

But with tremendous opportunit­y, also comes risk. Genomics could potentiall­y be used for less altruistic purposes. Conceivabl­y, banks, insurance companies and businesses could use this informatio­n to discrimina­te in the provision of services to us.

We need to think about what rules we have around how genetic/genomic informatio­n is stored. Who can access it? What safeguards are in place to stop it from getting into the wrong hands?

We are now seeking 25 people who are broadly representa­tive of the Irish population to join our Citizens’ Jury, listen to experts, learn more about genomics, and share their views around key issues.

An initiative of IPPOSI (Irish Platform for Patient Organisati­ons, Science and Industry) - a patientled alliance of patient organisati­ons, scientists and healthcare companies, in collaborat­ion with the RCSI Public Patient Involvemen­t Office, our jury will meet both online and in person in June 2022. It will hear ‘testimony’ from ‘expert witnesses’, before coming together in person in Dublin to arrive at their ‘verdict’.? Jurors will receive a €400 gratuity for their participat­ion.

If you are over 18 years, and resident in the Republic of Ireland, and would like to find out more, please visit www. ipposi. ie, before the closing date of March 23, 2022. Yours sincerely, Derick Mitchell,

CEO, IPPOSI, 77 Camden Street

Lower, Dublin 2, D02 XE80.

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