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The MITOFAMILY Study

The MITOFAMILY study

Genetics, reproduction and biotechnologies in the context of mitochondrial disorders

MitoFamily

Introduction

This research focuses on reproductive choices in the context of mitochondrial disorders. The research aims to gain a better insight into how recent developments in genetics and biotechnologies, and in particular emerging nuclear transfer techniques, are changing the perception of this uncertain inherited and chronic disease. It seeks to understand, in particular, the perceptions and experiences of women carrying mitochondrial disorders and the impact this has on their decisions about having children.

There is still no known cure for these maternally inherited disorders, which can cause severe diseases, such as dementia or myopathy. Women diagnosed with these 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 and preimplantation genetic diagnosis), 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 study

The research will provide empirical data, through in-depth interviews mainly with women with mitochondrial disorders but also with scientists, genetic counsellors and clinicians, on four related issues: 1) the perception of mitochondrial disorders; 2) medical risks and reproductive choice; 3) the use of reproductive technologies; 4) genetic inheritance, identity and family definition.

The study is led by Dr Cathy Herbrand|, and is funded by the De Montfort University Early Career Research Fellowship (2015-2017).

Contact us

If you would like to find out more about the study, please contact:

Dr Cathy Herbrand
School of Applied Social Sciences, Hawthorn Building,
De Montfort University,
The Gateway,
Leicester, LE1 9BH

E: Cathy.Herbrand@dmu.ac.uk|
T: +44 (0)116 250 6422

 
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