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Consent for newborn screening: screening professionals' and parents' views
Public Health
|November 8, 2019
Summary
Parents and screening professionals in England prefer full disclosure for newborn bloodspot screening (NBS) consent. Knowledge gaps influence opinions on consent models, highlighting the need for clear information before decisions are made.
Area of Science:
- Public Health
- Bioethics
- Genetics
Background:
- England's newborn bloodspot screening (NBS) program uses an informed consent model.
- Expansion of NBS necessitates evaluating alternative consent strategies.
- Previous research has not simultaneously explored parent and professional perspectives in real-time.
Purpose of the Study:
- To examine the acceptability and effectiveness of alternative consent models for NBS.
- To explore parents' and screening professionals' (SPs) views on consent for NBS.
- To understand how information influences consent preferences.
Main Methods:
- Qualitative focus groups with 45 parents and 37 SPs.
- Thematic analysis of collected data.
- Use of pre-interview consent models to guide data collection.
Main Results:
- Parents and SPs initially differed on consent models, but both favored full disclosure when informed about bloodspot storage.
- Both groups desired informed consent but were uncertain about achieving it.
- Parents felt NBS was not presented as optional, and questioned the voluntariness and adequacy of current informed consent.
Conclusions:
- Simultaneous, real-time exploration of parent and SP views is novel and rigorous.
- Findings suggest a preference for transparency over choice for some parents.
- Current consent practices may be insufficient, particularly regarding bloodspot storage; further research on consent efficacy is needed.
