P45 The acceptability of using genetic information to guide treatment of asthma to children, young people, and parents (pilot study)

Abstract

Background There are multiple pharmacogenomic studies in children's asthma. It has not been established how (or if) children, young people or their parents/legal guardians would accept use of their genetic information to guide their treatment. Aim To determine the views of CYP, and parents/legal guardians, on aspects of using genetic testing to guide management of childhood asthma. Methods Focus group session with both the Liverpool's young people advisory group (YPAG), and Parents' group, at Alder Hey Children's Hospital. Group members completed anonymous questionnaires determining the importance and privacy associated with different themes of data, with a special focus on health data. Results There were 11 responders, five parents/guardians and six CYP. Both the parents and the CYP considered personal data, such as date of birth, NI number and name, both the most important and the most private. Health data was considered the second most important, and private, although parents rated data from social media data an equal second in terms of privacy. Within healthcare data, CYP considered data regarding their mental health, followed by medical conditions and genomic data, as the sources to be of highest importance. Parents considered their child's illnesses most important, followed by genomic data. In relation to privacy, CYP considered genomic data first followed by information concerning their mental health. The parents considered genomic data highest for data privacy. Conclusion From this session it is clear that health data in general, and genetic data in particular, has a high value of importance to CYP and parents, but there are variations in how data is prioritised. These pilot data will inform a large scale patient and parent acceptability study in personalised medicine and childhood asthma (CHANGE study).