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Parental Views on Newborn Next Generation Sequencing: Implications for Decision Support
Rebecca R Moultrie1, Ryan Paquin2, Christine Rini3,4
1Center for Communication Science, RTI International, 3040 E. Cornwallis Road, Research Triangle Park, NC, 27709-2194, USA. munch@rti.org.
Maternal and Child Health Journal
|May 20, 2020
Summary
Parents value quality of life when deciding on newborn exome sequencing (NGS-NBS). Understanding these perspectives helps create decision aids for this important newborn screening choice.
Area of Science:
- Genomics
- Pediatrics
- Bioethics
Background:
- Next-generation sequencing in the newborn period (NGS-NBS) offers potential benefits but raises complex parental decisions.
- Developing effective decision aids requires understanding parental values and beliefs.
Purpose of the Study:
- To explore parental perspectives on NGS-NBS to inform the creation of a decision support tool.
- To understand factors influencing parental decisions regarding NGS-NBS and result disclosure.
Main Methods:
- Dyadic interviews were conducted with 66 parents (33 couples).
- Qualitative framework analysis was used to analyze interview transcripts.
- Focus on decisions about undergoing NGS-NBS and learning results based on onset and actionability.
Main Results:
- Favorable views included early intervention, preparedness, child autonomy, and altruism.
- Concerns involved potential negative effects, psychosocial harm, and religious beliefs.
- Parents consistently prioritized quality of life in their decision-making.
Conclusions:
- Parental perspectives are crucial for informed decision-making regarding NGS-NBS.
- A parent-centric decision aid, informed by these values, can support families.
- Addressing parental values is key in the evolving landscape of newborn screening.
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