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.

26th July 2022

Seminar time: 11:00am BST

Zoom Webinar link: https://sanger.zoom.us/j/98067995147?pwd=OTg3UjA1NEFESlVMa1dTcnRyWWxxUT09 

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.    

Related Link:

Link to webinar on Zoom

Citation:

Staunton C, McGrath V (2022) Perspectives of the Irish public on the use of their genetic data for research. A part of the Engagement & Society Research Seminar Webinar Series. 26 July. Online

The Health Research Data Protection Network (HRDPN) is a Network of data protection professionals from Universities, Hospitals, the HSE, NCTO, and not-for-profit Research Organisation/Networks.

The HRDPN has published a Practical Guide on Data Protection for Health Researchers.

This Practical Guide (“the Guide”) is intended to provide general information and understanding of the law to researches to help them understand with plain non-legal language their and their organisation’s role with regard to Data Protection, as well as related responsibilities and requirements.

The guide is available on the useful resources page of the National Clinical Trials Office website: https://ncto.ie/events-news/usefulresources/

Read the latest report of the IHRF on Health Reseach.
Their conclusions will be music to your ears!

The ISHG is pleased to share the recently published HRCI publication ‘Using data for better health research’

Winners of the 2021 National DNA Day Schools Essay Writing Competition, and details of the 2022 Competition.

Our 24th National conference again took place online this year. Our conference was really well received, our delegates particularly enjoyed the lunchtime discussion (for and against) reporting secondary findings (when found in a diagnostic laboratory) between Prof Gianpierro Cavalleri and Dr Lisa Bradley.