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Dealing with genetic uncertainty in cardiac disorders: a qualitative study on the effect of cardiac VUS results on patients and their families

Arrhythmia Alliance (A-A) has been asked to support an MSc Genetic and Genomic Counselling student who is conducting a research study as part of a final dissertation project.

The research is titled “Dealing with genetic uncertainty in cardiac disorders: an interview study exploring the impact of cardiac VUS results on patients and their families.”. Many people who undertake genetic testing for an inherited cardiac (heart) condition do not receive a certain result. Instead, a gene change is found where there is not enough evidence available to say whether the gene change is disease causing or part of the natural, harmless variation that all humans have. This is known as a variant of uncertain significance (VUS). This study aims to explore how this result may impact on a patient and their family.

Taking part would involve one 45 – 60-minute interview carried out over Zoom by the student researcher. During the interview, you would be asked to talk about your experiences around genetic testing, receiving your result and any impacts this has had on you and your family.

If you would like to support this study, please email jenni@heartrhythmalliance.org giving permission for your name and contact details to be shared with the student.

This is not an A-A research study

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