Report
18 Jan 24
Genomics healthcare and research
A project aimed at developing a UK model for applying ethical standards to genomics initiatives.
News
Action needed to address gaps in ethical guidance for genomic research and healthcare practice
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:
- Diversity and genomics
- Familial disclosure
- Polygenic scores
- Sustainability and genomics
- Whole genome sequencing of newborns
We believe a collaborative approach is needed to address these gaps effectively and that having a UK-wide coordinating role to oversee the development of further resources would help to ensure that these actions can be taken forward in a consistent and effective manner.
We hope that by encouraging individuals and organisations to share their knowledge and work, duplication of effort can be avoided and a higher degree of consistency in ethical approaches can be achieved. This is how we will ensure we are making the most of promising genomic technologies.
We hope that by encouraging individuals and organisations to share their knowledge and work, duplication of effort can be avoided and a higher degree of consistency in ethical approaches can be achieved. This is how we will ensure we are making the most of promising genomic technologies.
Danielle Hamm, Director of the Nuffield Council on Bioethics, said:
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.”
Notes:
- This work builds upon our previous work including the report ‘Ethics in Genomics and Research: Building Connections and Sharing Best Practice’ and a summary of case studies published in July 2023. It has been informed by engagement with a range of stakeholders and desk-based research. We are grateful to everyone who has contributed to this work.
- This report is accompanied by a ‘resource bank’ which lists all the resources mentioned throughout the report. The bank will be amendable over time at the request of external stakeholders who may have identified or developed missing or future resources. Similarly, resources can be removed on request if they are no longer relevant or appropriate. Requests can be made by emailing us at: bioethics@nuffieldbioethics.org.
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