Ethical issues in mitochondrial disorders
Research type
Research Study
Full title
Ethical considerations in the management of children with mitochondrial disorders
IRAS ID
236063
Contact name
Sarah Aylett
Contact email
Sponsor organisation
Great Ormond Street Hospital NHS Foundation trust for Children
Duration of Study in the UK
1 years, 3 months, 0 days
Research summary
The purpose of the study is to examine the ethical issues in the management of children with mitochondrial disorders. These are complex conditions, many of which are individually rare and for which there is no definitive treatment. These factors, in addition to the often progressive and life threatening nature of the disorders raises ethical challenges for professionals managing these patients and for their parents. This information will be sought by interviewing parents to obtain qualitative data and also by asking parents who are members of the UK mitochondrial support group to complete a questionnaire focusing on the use of experimental and innovative treatments and parents’ use of and their views about social media in healthcare. The latter will provide both quantitative and qualitative data. By understanding these issues and parents’ perspectives, this will enable to professionals to optimise their approach and their partnership with parents. It is anticipated that the information from the study will lead to a guideline for the approach to ethical challenges in these conditions. The study is part of a planned Sabbatical for the CI. The questionnaire regarding the use of experimental and innovative treatments and parents' views of the use of social media in healthcare will also be completed by members of the Australian Mitochondrial Disease Foundation. This will be collaborative with Professor Lynn Gillam at the Royal Melbourne Children's Hospital. ethics approval will be sought from this institution for the Australian collaboration.
REC name
London - Riverside Research Ethics Committee
REC reference
18/LO/0038
Date of REC Opinion
31 Jan 2018
REC opinion
Further Information Favourable Opinion