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Explaining a sex chromosome abnormality to children

Researchers: Professor Dorothy Bishop

By Nuffield Foundation

Project overview

Concepts from genetics, such as chromosome abnormality, are difficult for many adults to understand, and there are additional challenges in explaining them to children. There is a risk of causing distress by making a child feel stigmatised, yet many people would feel it would be wrong to hide information from an affected individual.

This project tackles the issues of disclosure and effective communication of chromosome abnormality, with a focus on two groups of children with an extra sex chromosome, conditions whose effects are often mild.

The project will review existing literature on disclosure of chromosome status to children; survey affected families to find out whether they have disclosed chromosome status to children and how disclosure was received by the child; conduct studies with parents of children with chromosome abnormalities; and use this information to develop materials that families can use to explain chromosome disorders.


  • Professor Dorothy Bishop
    University of Oxford

  • Director, Welfare
    Nuffield Foundation
By Nuffield Foundation

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We aim to improve people’s lives by funding research that informs social policy, primarily in Education, Welfare and Justice. We also fund student programmes that give young people skills and confidence in science and research.

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