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 BishopUniversity of Oxford
Director, WelfareNuffield Foundation