Your DNA, Your Say collaborators July 2022

ydys@wgc.org.uk

1 participants
3 discussions

YDYS Ireland Webinar: Perspectives of the Irish public on the use of their genetic data for research

by Emma Garlick

26th July 2022 Seminar time: 11:00am BST Zoom Webinar link: https://sanger.zoom.us/j/98067995147?pwd=OTg3UjA1NEFESlVMa1dTcnRyWWxxUT09 <https://sanger.zoom.us/j/98067995147?pwd=OTg3UjA1NEFESlVMa1dTcnRyWWxxUT09%C…> Password: ESseminar YDYS Ireland Webinar: Perspectives of the Irish public on the use of their genetic data for research 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 We are honoured to be hosting our 7th and final installment of the Your DNA Your Say Seminar Series with the Irish team. 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. People living with rare conditions in Ireland are spending years seeking a diagnosis. A recent survey by Rare Diseases Ireland revealed that 37% or respondents were waiting over 5 years for a diagnosis with 53% of respondents being investigated and treated for 3 or more rare conditions and 73% seeing 3 or more consultants with different specialisms on their diagnostic journey. The burdens of this diagnostic odyssey on the individual, their family and the healthcare system as a whole are enormous. Genetics & genomics is a tool that can help to reduce this burden by shortening the diagnostic odyssey and providing a definitive answer. 77% of respondents who had access to genetic services received a diagnosis through this pathway. Genetic diagnosis provides those living with rare conditions the opportunity to get involved in research and to access new and novel therapies. It provides families with opportunities to manage risk, plan future pregnancies and network with families with a similar diagnosis.

2 years

YDYS Ireland Webinar: Perspectives of the Irish public on the use of their genetic data for research

by Emma Garlick

26th July 2022 Seminar time: 11:00am BST Zoom Webinar link: https://sanger.zoom.us/j/98067995147?pwd=OTg3UjA1NEFESlVMa1dTcnRyWWxxUT09 <https://sanger.zoom.us/j/98067995147?pwd=OTg3UjA1NEFESlVMa1dTcnRyWWxxUT09%C…> YDYS Ireland Webinar: Perspectives of the Irish public on the use of their genetic data for research 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 We are honoured to be hosting our 7th and final installment of the Your DNA Your Say Seminar Series with the Irish team. 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. People living with rare conditions in Ireland are spending years seeking a diagnosis. A recent survey by Rare Diseases Ireland revealed that 37% or respondents were waiting over 5 years for a diagnosis with 53% of respondents being investigated and treated for 3 or more rare conditions and 73% seeing 3 or more consultants with different specialisms on their diagnostic journey. The burdens of this diagnostic odyssey on the individual, their family and the healthcare system as a whole are enormous. Genetics & genomics is a tool that can help to reduce this burden by shortening the diagnostic odyssey and providing a definitive answer. 77% of respondents who had access to genetic services received a diagnosis through this pathway. Genetic diagnosis provides those living with rare conditions the opportunity to get involved in research and to access new and novel therapies. It provides families with opportunities to manage risk, plan future pregnancies and network with families with a similar diagnosis.

2 years

YDYS Ireland Seminar (ES Seminar Series)

by Emma Garlick

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 [/var/folders/41/m6gk958n6zb8n8nsdq3dpv0m000llh/T/com.microsoft.Outlook/WebArchiveCopyPasteTempFiles/cidDDAFE692-2E61-449D-B8AF-09CF54DBBEDC@Home] Wellcome Connecting Science| Wellcome Genome Campus | Hinxton | Cambridgeshire | CB10 1SA | UK Wellcome Connecting Science enables everyone to explore genomic science and its impact on research, health and society. wellcomeconnectingscience.org/societyandethics <http://www.wellcomeconnectingscience.org/societyandethics> Follow Research and Dialogue on Twitter<https://twitter.com/ethicsWCS> | YouTube<https://www.youtube.com/channel/UCASglZ45HDb5b7r8aNJP56w/videos>

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Your DNA, Your Say collaborators July 2022