The Citizens’ Jury on the Future Use of Genomics in Health Care and Health Research in Ireland, organised by the Irish Platform for Patient Organisations, Science and Industry (IPPOSI), has published its verdict.
Setting out 22 recommendations for health policy makers to consider, the 24 jurors are united in their appeal for greater national-level planning and action around genomics now and into the future. In an open letter to the HSE and to the Department of Health, they call for greater public engagement and for a formal response to their proposals.
The recommendations were arrived at after more than 16 hours of deliberations, but jurors are acutely aware that their findings have only scratched the tip of the iceberg. They know that sustained public debate is needed – which explains why one of their key calls to action is to urge the Department of Health and the HSE to immediately engage members of the public and key interest groups in informed dialogue around this issue.
The Jurors Call For:
A national programme for genomics to foster trusted person-centred public-private partnerships
A new agency to monitor the implementation of the national programme for genomics
A secure national infrastructure to manage and use genomic data
A citizen-centred model of consent to allow for informed choice around genomics in care and in research
An inclusive public engagement plan to increase literacy and explore perspectives around genomics
Juror Recommendation Highlights:
Appropriate Use: Jurors decided that genomics should be used in health care in a targeted way for the purpose of diagnosing and treating disease, but not for aesthetic purposes. The option to share genomic data with health research should be decided on an individual basis and follow a clear consent process.
National Partnerships: Jurors agreed that Ireland should develop a national genomics programme based on a trusted partnership between the public and private sector. The implementation of the programme should be directed by a new state-appointed national genomics agency.
Data Security: Jurors proposed that Ireland establish a national genomics database to securely store and manage genomic data. Any breaches or misuse of data should be met with serious consequences. An Ombudsperson should be created to receive and respond to complaints from individuals.
Consent: Jurors maintained that individuals should be able to view and manage their own genomic data. People should be asked to ‘opt-in’ to share their data, and a consent process should provide individuals with the time and information needed to make an informed decision.
Public Engagement: Jurors underlined the importance of engaging the public in decisions about our collective health future. Public information and education should accompany engagement to allow for meaningful, sustained and inclusive engagement.
To learn more about the IPPOSI Citizens’ Jury on the Future Use of Genomics in Ireland, click here.
To download the full verdict report, click here.