Evidence · Research paper
Optimizing Informed Consent for Australian Newborn Bloodspot Screening and Research: Consensus Workshop Insights and Recommendations.
- Allied health
- Communicating with families
- Education and simulation
- Ethics
- Families and professional practice
- Medical
- Nursing
- Postnatal and transitional care
Summary
This qualitative study reports two facilitated stakeholder workshops (86 participants) exploring how to improve informed consent for newborn bloodspot screening in Queensland, Australia, including emerging genomic screening and screening-related research. Priority areas identified were revising the Guthrie card and consent statement, developing consistent antenatal information resources, and standardised consent training for healthcare staff. Discussions highlighted tensions around information requirements and layered consent models, and the authors call for a nationally consistent framework.
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- Licence:
- Open (Creative Commons)
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