Implications for families of advances in understan... [Seizure. 2010] - PubMed result

Seizure. 2010 Dec;19(10):675-9. Epub 2010 Nov 20.
Implications for families of advances in understanding the genetic basis of epilepsy.

Hammond CL, Thomas RH, Rees MI, Kerr MP, Rapport F.

Institute of Life Sciences, School of Medicine, Swansea University, SA2 8PP, UK; Wales Epilepsy Research Network (WERN), School of Medicine, Swansea University, SA2 8PP, UK; Genetics Department, Guy's Hospital, Great Maze Pond, London, SE1 9RT, UK.

Abstract

Investigations into families with a large number of individuals with epilepsy have led to the discovery of epilepsy-causing (or epilepsy associated) gene mutations. These discoveries offer advantages and insights for the patient, family, healthcare professionals and biomedical scientists. Despite these benefits, there is little evidence about the impact of participation in genetic research for families with epilepsy. Here we report on the reflections of individuals who have participated in epilepsy genetic research through the Wales Epilepsy Research Network (WERN). Undergoing genetic investigation for inherited epilepsy has extensive emotive impact, both positive and negative, on individuals and families. Recognising these impacts is imperative to researchers working with families; having implications for study design, research consent and the provision of appropriate support.
Copyright © 2010 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.

PMID: 21095138 [PubMed - in process]
Implications for families of advances in understan... [Seizure. 2010] - PubMed result