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Parental views on informed consent for expanded newborn screening
1Department of Industrial Design, Coventry University, UK. L.moody@coventry.ac.uk
Insights
Parents desire clear information and decision-making power for expanded newborn screening. They believe current expanded screening doesn't require formal written consent, suggesting flexible ethical review processes.
Area of Science:
- Medical Ethics
- Public Health
- Genetics
Background:
- Universal newborn screening programs are expanding to detect rare inherited conditions.
- Ethical considerations, including informed consent and parental communication, are crucial for these service developments.
- Parental perspectives are vital for shaping flexible protocols aligned with public perception.
Purpose of the Study:
- To explore UK parents' and future parents' views on expanded newborn screening.
- To assess parental attitudes towards information provision and consent processes for expanded screening.
Main Methods:
- A mixed-methods approach was employed.
- Focus groups (n=29) and a web-survey (n=142) were conducted with parents and future parents.
Main Results:
- Parents prioritize guaranteed information and clear decision-making autonomy.
- Participants did not find the difference between existing and expanded screening significant enough to mandate formal written consent.
- A need for more flexible ethical review processes regarding information and consent in newborn screening was identified.
Conclusions:
- Parents expect transparency and control over their healthcare decisions in newborn screening.
- Current ethical frameworks may need adaptation to accommodate public views on expanded screening programs.
- Flexible approaches to consent and information are recommended for future newborn screening developments.
Background:
An increasing array of rare inherited conditions can be detected as part of the universal newborn screening programme. The introduction and evaluation of these service developments require consideration of the ethical issues involved and appropriate mechanisms for informing parents and gaining consent if required. Exploration of parental views is needed to inform the debate and specifically consider whether more flexible protocols are needed to fit with the public perception of new developments in this context.
Objective:
This study has been undertaken to explore perceptions and attitudes of parents and future parents to an expanded newborn screening programme in the United Kingdom and the necessary information provision and consent processes.
Design And Participants:
A mixed methods study involving focus groups (n = 29) and a web-survey (n = 142) undertaken with parents and future parents.
Results And Conclusions:
Parents want guaranteed information provision with clear decision-making powers and an awareness of the choices available to them. The difference between existing screening provision and expanded screening was not considered to be significant enough by participants to warrant formal written, informed consent for expanded screening. It is argued that the ethical review processes need to be more flexible towards the provision of information and consent processes for service developments in newborn screening.
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