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Published on: April 4, 2018
Parents' experiences of decision making for rapid genomic sequencing in intensive care
Fiona Lynch1,2,3, Amy Nisselle1,2,3, Zornitza Stark1,2,4
1Australian Genomics Health Alliance, Melbourne, Australia.
Insights
Parents making decisions about rapid genomic sequencing (rGS) for critically ill children experienced varied decision-making processes. Careful communication is crucial to support parents during this rapid testing in intensive care settings.
Area of Science:
- Genomic Medicine
- Pediatric Critical Care
- Bioethics
Background:
- Rapid genomic sequencing (rGS) is clinically valuable for critically ill infants and children.
- Parental informed consent for rGS, especially under time pressure, requires further investigation.
- Limited empirical data exists on parental decision-making experiences during rapid genomic testing.
Purpose of the Study:
- To explore parents' experiences with decision-making for rGS in critically unwell children.
- To inform the development of effective pre-test counseling strategies for rGS.
- To identify challenges in parental consent for rapid genomic testing in intensive care.
Main Methods:
- Qualitative study involving interviews with 30 parents nationwide.
- Thematic analysis of parental experiences regarding rGS decision-making.
- Focus on decision-making within a rapid timeframe (under one day average).
Main Results:
- Parents' decision-making for rGS varied in complexity and time taken.
- Some parents consented rapidly, while others deliberated due to concerns.
- Parents' perceptions of 'special' access to rGS were noted.
- Tensions exist between the medical need for rGS and parental decision-making autonomy.
Conclusions:
- Framing and delivery of rGS information must support autonomous parental decision-making.
- Pre-test counseling needs careful consideration to avoid implicit coercion in stressful settings.
- Addressing the identified tensions is essential as rGS becomes standard clinical practice.
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 decision making and avoid implicit coercion in a stressful intensive care setting. Many parents described feeling 'special' and 'lucky' that they were receiving access to expensive and typically time-consuming genomic sequencing. Thematic analysis revealed a spectrum of complexity for decision making about rGS. Some parents consented quickly and were resistant to pre-test counselling. Others had a range of concerns and described deliberating about their decision, which they felt rushed to make. This research identifies tensions between the medical imperative of rGS and parents' decision making, which need to be addressed as rGS becomes routine clinical care.
