Mitofamily: Genetics, reproduction and biotechnologies_v1_07-14
Research type
Research Study
Full title
Mitofamily: Genetics, reproduction and biotechnologies in the context of mitochondrial disorders
IRAS ID
162438
Contact name
Cathy Herbrand
Contact email
Clinicaltrials.gov Identifier
14GE14, GOSH R&D number
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
This research focuses on reproductive choices in the context of mitochondrial disorders. The research aims to gain an insight into how recent developments in genetics and biotechnologies, and in particular current debates on emerging nuclear transfer techniques, are changing the perception and categorisation of this uncertain inherited and chronic disease. It seeks to understand, in particular, the perceptions and experiences of women whose family is affected by mitochondrial disorders and the impact this has on their decisions about having children.
There is still no known cure for these genetic disorders, which can cause severe diseases, such as dementia or myopathy. Women diagnosed with these disorders, or whose mother or child was diagnosed with the disorders, face much uncertainty and possible dilemmas if they want children because transmission risks are difficult to assess. Apart from the current reproductive options (such as natural conception, adoption, egg donation, prenatal diagnostic (PND) and preimplantation genetic diagnosis (PGD)), a new alternative may soon be available with the development of ‘nuclear transfer’ techniques. This would enable the conception of healthy biological children, whose DNA would be inherited from three different people.
The research will provide empirical data, through in-depth interviews mainly with women whose family is affected by mitochondrial disorders but also with scientists, genetic counsellors and clinicians, on four related issues: 1) the perception and categorisation of mitochondrial disorders; 2) medical risks and reproductive choice; 3) the views on and experience of reproductive technologies; 4) genetic inheritance, identity and family definition.REC name
London - Riverside Research Ethics Committee
REC reference
14/LO/1745
Date of REC Opinion
14 Oct 2014
REC opinion
Favourable Opinion