18 Jan 24
Genomics healthcare and research
A project aimed at developing a UK model for applying ethical standards to genomics initiatives.
Through mapping existing ethical guidance available to those working in UK-based genomic research and healthcare, we have identified gaps in guidance that need addressing in a coordinated way.
We believe the Government’s ambition of a ‘gold standard UK model’ for genomics can only be achieved if ethics is truly embedded across policy and the practices of everyone involved in genomic research and healthcare.
We have published a new report, “Towards a gold standard of ethics in genomic healthcare and research: where are we?”, funded and developed in partnership with the Office for Life Sciences (OLS). This report brings together, for the first time, a comprehensive UK map of publicly available ethics resources aimed at supporting the discovery, development and application of genomic technologies. The resources cover a range of topics including consent and confidentiality, data use and governance, prenatal genomic testing, and synthetic genomic data.
The report highlights that whilst current resources are extremely valuable, there are areas with gaps that need attention. These gaps include:
We hope our resource mapping will help promote further collaboration, accountability and consensus building across patients, participants, researchers, clinicians, policymakers and funders of genomics-based research and medicine.
Through us all working together, we can help ensure that the benefits of this promising science can be realised for all.”
Health Minister, Andrew Stephenson, Department of Health and Social Care, said:
We are committed to establishing a gold standard of ethics in genomic healthcare in the UK to support the development of new treatments and improve patient care.
This report will help us focus on protecting patient confidentiality, consent, and how we address diversity in genomics.”