It's up to you: Family Choices and Fragile X DVD Evaluation Study

Communicating genetics with people with learning disabilities

London IDEAS worked with the Design Laboratory at Central Saint Martins and the Fragile X Society on an innovative animation project to help carriers of Fragile X understand the information they receive in their genetics consultations.  The team includesd graphic designers, genetic counsellors, a consultant geneticist and a science communicator. 

The aim of the project was to provide extra support for Fragile X carriers with mild to moderate learning disability.  Such women may find it difficult to fully understand the risks of her child having Fragile X, what this would mean for her, and what reproductive choices are available to her and may be disenfranchised, feeling that they are not 'allowed' to make their own decision.

Using an animation alongside a genetic consultation to communicate the concepts of genetic inheritance and risk will address this area of difficulty by providing a complementary and engaging method of communication that can be taken home and reviewed by women in their own time.  The animation is not designed to replace counselling and therefore does not give detailed information about the nature of the prenatal test, or of the complexities of Fragile X inheritance.

The story

The animation is narrated by Su, herself a carrier of Fragile X.  She begins by explaining what genes and chromosomes are, and then goes on to explain the X-linked inheritance of Fragile X, and the potential difficulties of looking after an affected child.  We then follow her as she goes through the decisions involved in having a baby - whether to have a prenatal test, and whether to have a termination if the test is positive.  The end is left open and reiterates that everyone has the right to their own choice at each stage and that support is available for women as they make these choices.

Outcome

At each stage of development of the story and the animation, feedback was sought from women with experience of Fragile X, and from genetics consultants. The result is a unique, engaging and appropriate resource available on DVD. Please contact Dr Angela Barnicoat for further information.