Predictive Genetic Testing in Young Adults: A Qualitative Study

  • Research type

    Research Study

  • Full title

    How do Young Adults View Predictive Genetic Screening in Inherited Cardiac Conditions: A qualitative study exploring the patient’s perspective

  • IRAS ID

    191108

  • Contact name

    Rebecca Wassall

  • Contact email

    r.wassall@rbht.nhs.uk

  • Sponsor organisation

    Plymouth University

  • Duration of Study in the UK

    1 years, 5 months, 27 days

  • Research summary

    Symptoms for Inherited Cardiac Conditions (ICCs) are variable and can present at any age. In many cases a family will be unaware of their genetic predisposition to an ICC until a family member has their first symptom. This could range from mild symptoms of palpitations to a sudden cardiac death, leading to devastation in the family. Consequently, asymptomatic relatives are offered predictive genetic screening in order to identify their risk for developing an ICC through a process called cascade screening.

    With recent advances in genetic screening, the clinical application of predictive and diagnostic tests have increased, improving clinicians ability to risk stratify patients and deliver preventative therapies. Yet the views and experiences of ICC patients having predictive testing in this particular age group are limited.

    The aim of this study is to explore the research question ‘How do Young Adults View Predictive Genetic Screening in Inherited Cardiac Conditions: A qualitative study exploring the patient’s perspective’

  • REC name

    North East - York Research Ethics Committee

  • REC reference

    15/NE/0365

  • Date of REC Opinion

    23 Oct 2015

  • REC opinion

    Favourable Opinion