14 Jul
2022
14 Jul
'22
2:56 p.m.
Hello All,
I hope you are well!
We are holding the final webinar in the YDYS series this year which will be delivered by
Dr. Ciara Staunton and Vicky McGrath on Tuesday July 26th at 11am UK time. Please see
below for more details:
Tuesday 26th July 2022
11:00-12:00 BST
Dr. Ciara Staunton and Vicky McGrath
Perspectives of the Irish public on the use of their genetic data for research
Webinar link: https://sanger.zoom.us/j/98067995147?pwd=OTg3UjA1NEFESlVMa1dTcnRyWWxxUT09
Who do the Irish public trust to use their genetic data for research, and what controls do
they want on its use? Dr Ciara Staunton, Senior Researcher at the Institute for
Biomedicine, Eurac Research and Vicky McGrath, CEO of Rare Diseases Ireland discuss
findings from the Irish arm of the Your DNA, Your Say study
Genomic medicine and research are at an important intersection in Ireland. A National
Genetic and Genomic Strategy is under development, and this should guide the
implementation of genetic and genomic medicine and research in Ireland. To ensure support
for any such policy, it is essential that the views of patients in Ireland inform its
development.
In this seminar, Dr Ciara Staunton, Senior Researcher at the Institute for Biomedicine,
Eurac Research, will discuss the results of a survey of 1000 participants in Ireland about
their views on the use of their genetic data in research. In particular, she will
highlight concerns they have about potential harms, who can access their genetic data for
research, and their preferences on the governance of their genetic data. Vicky McGrath,
CEO of Rare Diseases Ireland, will respond to these findings and what they mean for
patients with rare diseases in Ireland.
There are an estimated 300,000 people in Ireland living with rare conditions. With over
6,000 identified rare diseases, of which 72% are genetic in origin, genetics and genomics
are key to both care and innovation for this underserved community.
Information on the webinar can be found here: https://bit.ly/ESseminarYDYSIreland
If you could share this with anyone you feel would be interested in attending, or on
social media channels, that would be fantastic. Please find attached the banner we have
created for twitter.
Have a lovely weekend and hopefully see you virtually on Tuesday 26th!
Best Wishes
Emma
Emma Garlick
Team Administrator
(Research & Dialogue / Creative Team)
Working days: Tuesday, Wednesday and Friday typically
Engagement & Society
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