Genomics healthcare and research
A project aimed at developing a UK model for applying ethical standards to genomics initiatives.
Criteria for case studies in genomics
Our call for case studies closed on 5 September 2022 but if you would like to contribute to this project please contact Catherine Joynson.
We are looking for case studies that show how the ethical issues raised by a genomics initiative were identified, considered and, if applicable, resolved.
We will include genomics initiatives that fall in or across the three pillars of the Genome UK strategy:
- Diagnosis and personalised medicine: incorporating the latest genomics advances into routine healthcare to improve the diagnosis, stratification and treatment of illness.
- Prevention: Enabling predictive and preventative care to improve public health and wellness.
- Research: Supporting fundamental and translational research and ensuring a seamless interface between research and healthcare delivery
A ‘genomics initiative’ could be any of the following (this list is not exhaustive):
- research project
- NHS service or pilot
- public and patient involvement programme
- genomic database
- policy review
- regulatory initiative
- development of professional guidance.
Case studies should describe the ethical issues you encountered, how you went about considering them, any challenges, and what the outcome was.
We are looking for case studies from the past 10 years (2012-2022) across the NHS, Government, academia, and the charity and private sectors. We are primarily interested in examples from the UK, but international examples as comparators are welcomed.
Case studies should not include confidential information as they may be selected for publication (see below).
We will not be using what we find to try to develop overarching ethical frameworks or principles, or ethics guidance for healthcare professionals and researchers, for example around consent processes.
Our interest is in what you did and the challenges you faced, rather than the answers you came up with.
How your case study will be used
The case studies will be analysed for common themes and examples of best practice. This will be discussed at regional and national workshops in autumn 2022. A report of the outcomes and an illustrative selection of the case studies will be published on the Nuffield Council on Bioethics website in early 2023 and disseminated to the delivery partners of the Genome UK strategy.
How to get involved
It’s simple – tell us about how you went about tackling the ethical issues raised by a genomics initiative using this template. Please keep your case study to under 800 words and send to Catherine Joynson at firstname.lastname@example.org by Monday 5 September 2022.
Thank you for your help!
This work is funded and led by the Nuffield Council on Bioethics.