AN EVALUATION OF INFORMED CONSENT IN ORGAN TRANSPLANTATION IN ENGLAND
Research type
Research Study
Full title
AN EVALUATION OF THE LEGAL AND CLINICAL FACTORS SHAPING THE NORMATIVE DIMENSIONS OF INFORMED CONSENT AND THE DECISION-MAKING PROCESS IN ORGAN TRANSPLANTATION IN ENGLAND
IRAS ID
332011
Contact name
Farrah Raza
Contact email
Sponsor organisation
Max Planck Institute for Social Anthropology
Duration of Study in the UK
2 years, 0 months, 30 days
Research summary
This study will investigate how informed consent is realised in practice in organ transplantation through the use of qualitative research methods in hospitals in England. It will look at the decision-making process in organ transplantation concerning recipients or potential recipients of deceased donors. Consent to transplantation is more complex than other treatment and raises very specific questions due to the prolonged uncertainty, emotional distress, and the lack of alternative treatments available. Additionally, while there is vast literature on consent to organ donation, there is a gap in reference to consent to receiving a transplant. This study will consist of two themes. Theme One will focus on the decision-making processes within centres, considering aspects including how clinicians inform their patients of the risks and how clinical guidelines are implemented in practice. Theme Two will focus on informed consent in relation to diversity of values which may influence decisions. This will require looking at different types of transplantation, e.g. liver and kidney, to assess whether the consent process varies between them. In addition, it will consider the influence of more personal factors such as religion, culture and ethical beliefs on the decision-making process. Overall, we aim to capture a range of views on informed consent and how these views may be impacted by personal values. Since liver disease continues to rise in the UK, our study is topical and will impact the wider public.
REC name
South West - Frenchay Research Ethics Committee
REC reference
23/SW/0106
Date of REC Opinion
18 Oct 2023
REC opinion
Further Information Favourable Opinion