ALIVE UK 1.0
Research type
Research Study
Full title
Anonymity in living donor kidney transplantation: comparing donor and recipient perspectives on approaches between the UK, Netherlands and Sweden.
IRAS ID
209174
Contact name
Lisa Burnapp
Contact email
Sponsor organisation
Erasmus University Medical Center
Duration of Study in the UK
0 years, 2 months, 1 days
Research summary
In living donor kidney transplantation anonymity between donor and recipient is typically maintained prior to transplantation, but policies on anonymity after transplantation vary between countries. Some countries, such as the UK, use a conditional approach and allow meetings between donor-recipient pairs after donation and under the condition that both parties agree. In other countries, such as the Netherlands and Sweden, anonymity is absolute. Little is known about how anonymity is experienced by donors and recipients participating in living donation schemes. A recent study among donors and recipients who have given or received a kidney anonymously in the Netherlands and Sweden revealed that most donors and recipients were satisfied with their own experience of absolute anonymity before and after the operation. Nevertheless, the majority of donors and recipients appeared to be in favor of a conditional approach of anonymity, as is currently used in the USA and the UK. However, to date limited data is available on how anonymity in living kidney donation is experienced by donors and recipients in countries with a conditional approach of anonymity. How often is anonymity maintained or broken? If anonymity is broken, how do people experience this? And, do attitudes towards anonymity differ among countries with different policies on anonymity?
The aim of this project is to examine the experiences and attitudes of kidney donors and recipients in the UK and compare them to similar data from the Netherlands and Sweden (conditional versus absolute anonymity). These questions will be addressed by a questionnaire sent to all donors and recipients who have given or received a kidney anonymously in the UK over a 5 year period between 1st January 2010 to 31st December 2014. This study may inform policies and standards in all countries where unspecified donation and indirect specified donation into an exchange program is part of living donor transplantation practice.REC name
East Midlands - Nottingham 2 Research Ethics Committee
REC reference
16/EM/0281
Date of REC Opinion
5 Jul 2016
REC opinion
Favourable Opinion