PPI Opportunity in Genomic Data Infrastructure


Research Area:

Genetics/ Genomics

What is the research about?

Launched in 2018, 1+ Million Genomes (1+MG) is a European initiative that aims to allow safe sharing of genomic and clinical data across Europe for improved research, healthcare and health
policy making. In 2020, the Beyond 1 Million Genomes (B1MG) project was announced and supports 1+MG by providing guidance on best practices in genomic database set-up, legal
guidance, and data sharing. In 2022, the Genomic Data Infrastructure (GDI) project was announced to allow for the creation of the digital infrastructure needed to allow data access
between countries in the 1+MG initiative. Ireland joined the 1+MG and GDI efforts in 2022 and the GDI-IE project aims to establish the Irish data infrastructure that will link to similar
infrastructure across European partners, with PPI and public trust at its core. The GDI project has the goal of safely enabling analysis of human genetic data across national borders, to improve
research and clinical practice. GDI-IE operates across The Royal College of Surgeons in Ireland (RCSI), The University of Limerick (UL), Maynooth University (MU) and University College Dublin (UCD).

Opportunity for:

Person living with condition / Member of the public / Parent or carer / Social care experienced person / Service user

Involvement Opportunity Details


Time commitment:

The PPI Steering Board aims to meet 3 times per year. The meetings may be face to face or by teleconference (depending on group preference) and will each last approximately 1.5 to 2 hours. • PPI contributors are expected to attend all meetings (where possible). The quorum will be 3 members. • The first meeting will be scheduled in advance and within each meeting thereafter. We aim to be flexible in terms of mode, dates and time to accommodate all group members. Any relevant materials will be provided well in advance. Meeting minutes will be recorded by the GDI-Ireland programme manager. • Dependent upon project activities and deadlines, additional meetings may be required. Every attempt will be made to keep this to a minimum.

Contact between meetings:

Laura Whelan laurawhelan@rcsi.ie

Length of involvement:

a year, with potential to extend beyond this.

Start date for involvement:




Online / In Person

If online, explain how:

Most meetings will take place over microsoft teams, but some will also take place in person in RCSI, Dublin. There will be tasks communicated via email between meetings.

If in person, explain where:

Some meetings may take place in person at the Royal College of Surgeons in Ireland in Dublin

Other ways of communicating:

Phone call

Funding available for:

PPI contributor’s time / Travel and other expenses

If no funding available, explain why:

Not applicable

Other Information

Stage of the research study/ programme:

Early planning

Is this opportunity for PPI in a PhD:


Closing date to contact researchers:


Research Team

Contact person:

Laura Whelan


Royal College of Surgeons in Ireland

Contact email:


Researcher background:

Genetics, Genomics, Data Governance

Research funder:

European Commission/ Health Research Board


Interested in this PPI Opportunity?

Please complete this form and click SUBMIT

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