EPPiGen
Research type
Research Study
Full title
Ethical Preparedness in Genomic Medicine (EPPiGen)
IRAS ID
292500
Contact name
Anneke Lucassen
Contact email
Sponsor organisation
University of Southampton
Duration of Study in the UK
1 years, 10 months, 29 days
Research summary
The rapid technological advances in genomic medicine have been well documented, as has the potential for genomics to lead to important improvements in our understanding of health and the diagnosis and treatment of disease. We are now at a juncture where efforts to realise these promises are focused on establishing a national genomic medicine service within the NHS. This interdisciplinary research explores and facilitates the preparedness of the transition from single gene to whole genome approaches. We focus on those delivering and receiving genomic medicine services and how they deal with the ethical and social challenges raised.
Whilst radical transformations of our understandings of health are widely anticipated, the impact of expanding the reach of genomics on healthcare practices, systems, professionals and patients, and their ability to assimilate these changes, have been given less consideration. Health services need to be prepared to face new challenges born of the complexity, uncertainty and longevity of the clinical encounter in this field. This requires a detailed understanding of the social, psychological and ethical challenges that this transformative mode of medicine brings, and the work required to implement it in practice.
Our research addresses this much overlooked area, exploring the changes genomic medicine might bring in practice, and how we can ensure that healthcare professionals and patients are prepared for and supported to face the challenges these new modes of working may bring. Using qualitative approaches, the study comprises three workstreams designed to capture the perspectives, experiences and practices of i) laboratory professionals; ii) patients and their families; and iii) healthcare professionals. Each is designed to capture and trace ethical issues as they manifest in and transcend different areas of practice. This timely research will provide much needed evidence that will help truly embed genomic medicine within the UK’s NHS.
REC name
Wales REC 7
REC reference
21/WA/0344
Date of REC Opinion
16 Nov 2021
REC opinion
Further Information Favourable Opinion