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Residual newborn screening samples for research: parental information needs for decision-making
Erin Rothwell1, Lauren Clark, Rebecca Anderson
1College of Nursing, University of Utah, Salt Lake City, UT, USA.
Insights
Expectant parents desire specific information to decide on using their babies' residual dried blood specimens for research. Understanding these needs is crucial for informed consent and public trust in newborn screening research.
Area of Science:
- Public Health
- Bioethics
- Genetics
Background:
- Newborn screening programs collect residual dried blood specimens.
- These specimens have potential for future research applications.
- Ethical considerations and informed consent are paramount for specimen use.
Purpose of the Study:
- To determine the information needs of expectant parents regarding the research use of their infants' residual dried blood specimens.
- To identify key informational elements required for parents to make informed decisions.
Main Methods:
- Conducted three focus groups with expectant parents (pregnant women and partners).
- Conducted one focus group with prenatal healthcare providers and educators.
- Qualitative analysis of discussions to identify information categories.
Main Results:
- Identified eleven distinct categories of information needs across all focus groups.
- Parental information needs varied but centered on consent, data use, and specimen handling.
- Healthcare providers highlighted the importance of clear communication and ethical guidelines.
Conclusions:
- Informed parental consent is essential for the ethical use of residual dried blood specimens in research.
- Addressing parental information needs builds trust in newborn screening research and public health initiatives.
- Future research protocols must incorporate comprehensive information sharing to ensure genuine informed consent.
Purpose:
The purpose of this research was to identify what types of information expectant parents want to make a decision about the use of their babies' residual dried blood specimens for research.
Design And Methods:
Three focus groups were conducted with pregnant women and their partners and one focus group with prenatal healthcare providers and educators.
Results:
Eleven categories of information needs were identified within each focus group.
Practice Implications:
Providing sufficient information for parents to make informed choices will be essential to future research with residual dried blood specimens and to maintain public trust with the growing applications of this important public health program.
