Parents' experiences of decision making for rapid genomic sequencing in intensive care.

ABSTRACT: The clinical utility of rapid genomic sequencing (rGS) for critically unwell infants and children has been well demonstrated. Parental capacity for informed consent has been questioned, yet limited empirical data exists to guide clinical service delivery. In an Australian nationwide clinical implementation project offering rGS for critically unwell infants and children, parents made a decision about testing in under a day on average. This study reports parents' experiences of decision making for rGS within this rapid timeframe to inform pre-test counselling procedures for future practice. A nationwide sample of 30 parents, whose children were amongst the first to receive rGS, were interviewed. We found that framing and delivery of rGS require careful consideration to support autonomous dec

SUBMITTER: Lynch F 

PROVIDER: S-EPMC8632931 | biostudies-literature | 2021 Dec

REPOSITORIES: biostudies-literature