Patient and Practitioner workshops for an Intellectual Disabilities and Epilepsy Neuropsychiatric Genetic Research Database Register: Ethical dilemmas for study design
person-centred approach.A specific "hard to reach" population of PwID and Epilepsy were also discussed (theme 5.) ConclusionThemes build on previous work addressing the need for flexible and nuanced approaches to ensure research with PwID is communicated appropriately and delivered in inclusive, ethical ways.These approaches raise challenges and ethical dilemma for researchers defining study delivery protocols and processes that fit NHS Research Ethics Committee (REC) application and approval processes.
Authors
- Liz Boardman
- Pamela Bowman (ORCID: https://orcid.org/0000-0002-5241-7700)
- Lance Watkins (ORCID: https://orcid.org/0000-0002-0447-5906)
- Sarah Lennard (ORCID: https://orcid.org/0000-0001-9033-6752)
- Brendan McLean (ORCID: https://orcid.org/0000-0003-1419-8540)
- Rohit Shankar (ORCID: https://orcid.org/0000-0002-1183-6933)
- Jon Allard
- Danielle Bilkey
- Anna Simpson
- Chloe Staples
- Sarah Mitchell
Institutions
- Centre for Mental Health (GB)
- Cornwall Partnership NHS Foundation Trust (GB)
Publication Details
- Journal
- Seizure
- Published
- 2026-04-01
- DOI
- https://doi.org/10.1016/j.seizure.2026.04.008
- Primary Topic
- Genetics and Neurodevelopmental Disorders
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- LivaNova
- GW Pharmaceuticals
- National Institute for Health and Care Research
- Eisai
- Angelini Pharma
- Samsung Biomedical Research Institute
- Engineering and Physical Sciences Research Council
- Economic and Social Research Council