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Letters to the Editor: Like to join a citizens’ jury on genomics?

March 19th, 2022 3:10 PM

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EDITOR – Would readers of The Southern Star would be interested in participating in a citizens’ jury to hear the arguments for and against genomics, and to deliver their judgment?

   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, a patient-led 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 March 23rd.

Derick Mitchell, 

The Irish Platform for Patient

Organisations, Science and Industry,

Camden Street Lower,

Dublin 2.

College survey on separated families

EDITOR – One Family, Ireland’s national organisation for people parenting alone, sharing parenting and separating is seeking parents living in Cork to take part in an online survey on the experiences of young children living in families where parents are separated.

The survey is being carried out by a joint research team from Trinity College Dublin and University College Cork on behalf of One Family.

The research project is funded through the RTÉ Toy Show Appeal and Community Foundation for Ireland Fund and is seeking to develop guidance on contact time for infants and young children in separated families.

The most common time for parents to separate is when their child or children are very young. Many families seek help in setting up and managing contact arrangements but find there is no uniform approach.

We see, through our work with families, that parents often struggle to determine how to best share the parenting of their young children.

This can be extremely challenging for parents and children alike, particularly in situations where there is conflict, abuse and/or limited contact between parents. We want to change all this by developing a child-centred, best practice tool that can be used by parents, legal and social care professionals alike, to make safe and optimal contact arrangements for children under the age of six years.

The survey is open to mums and dads who have experience of sharing parenting of a child or children when they were aged 0-6 years old.

Parents can answer for past experiences, once their child is under 18 years of age at time of responding. The survey is open until March 31st and will take approximately 20-30 minutes to complete. You can see onefamily.ie for more.

Niamh Kelly,

policy manager,

One Family,

Smithfield,

Dublin 7.

Distrust does not justify this war

EDITOR – Patrick Horgan in his letter of March 3rd, is of the opinion that ‘Moscow cannot trust the West on anything’.

He may indeed be correct in that (trust and/or lack of trust cuts both ways). However, perceived ‘lack of trust in the West’ does not, in my opinion, justify invasion of a sovereign nation, the killing of women and children, in addition to the violation of basic human rights and the Geneva Convention.

These acts I suggest cannot be justified and they put Putin on a par with Adolf Hitler and Josef Stalin.

Michael A Moriarty,

Rochestown,

Cork.

Strong local links to Endurance  discovery

EDITOR –Ernest Shackleton, from Athy in Co Kildare, had two other Irishmen aboard with him on the Endurance – Tim McCarthy and Tom Crean – and all three survived.

Tim McCarthy was from Kinsale and the Kinsale Historical Society erected two busts on the pierhead in Kinsale which are pride of place and well admired by tourists always.

There is also an annual talk on the bravery of all the explorers.

Tim McCarthy died when his ship was torpedoed  in WWI.

Tom Crean was from Kerry and died in 1938 and his granddaughter, an explorer from Kerry, retraced her grandad’s steps during an expedition in 2016.

She has warmly welcomed the discovery of the Endurance and will bring further attention to the fact that three of the crew were Irish.

Noel Harrington,

Kinsale Historical Society,

Kinsale.

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