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Frequency and reasons that parents decline genetic testing for critically ill neonates
Katharine Press Callahan1,2, Rebecca Mueller2, Karen Crew1
1The Children's Hospital of Philadelphia, Philadelphia, PA.
Insights
Twenty-one percent of parents declined genetic testing for ill neonates. Key reasons included perceived irrelevance and fear of unwanted information, influencing future parental counseling.
Area of Science:
- Medical Genetics
- Neonatal Care
- Bioethics
Background:
- While parental support for genetic testing in neonates is high, a subset declines for unclear reasons.
- Understanding parental decision-making is crucial for effective genetic counseling and informed consent.
Purpose of the Study:
- To determine the proportion of parents declining genetic testing for ill neonates.
- To characterize the clinical and demographic factors of parents who decline testing.
- To categorize the rationales behind parental decisions to decline genetic testing.
Main Methods:
- Retrospective review of medical records for clinical and demographic data of neonates.
- Comparison of characteristics between parents who consented and declined genetic testing.
- Qualitative interviews with parents who declined testing to ascertain their reasoning.
Main Results:
- 21% (51/247) of parents declined recommended genetic testing for their neonates.
- Primary rationales for declining included perceived irrelevance (83%) and fear of unwanted information (63%).
- Parents declining testing were more likely to have children with prenatal diagnoses or congenital anomalies and private insurance.
Conclusions:
- Parental refusal of neonatal genetic testing stems from a distinct assessment of benefits and harms.
- Future counseling should address parental concerns regarding relevance and potential for unexpected findings.
- Incorporating these perspectives can improve communication and support for parents making genetic testing decisions.
Purpose:
Current literature reports strong support among parents for genetic testing for ill neonates; yet, some parents decline this testing for unknown reasons. We aimed to document the proportion of parents who decline, describe their clinical and demographic characteristics, and categorize their rationales.
Methods:
We reviewed medical records to collect and compare clinical and demographic information for patients whose parents consented to and declined recommended genetic testing. We also conducted brief interviews with parents who declined testing to discover their rationales.
Results:
Fifty-one of 247 parents (21%) declined recommended genetic testing. The most common reason for declining, cited by 83% of parents interviewed, was that the testing felt irrelevant to the problems they saw as most important. The second most common reason, cited by 63%, was worrying that the testing might yield unwanted information. Compared with parents who consented, those who declined were more likely to be making the decision for a child with a prenatally diagnosed condition (P = .022) or congenital anomaly (P = .029) and to have private health insurance (P = .031).
Conclusion:
Parents who decline genetic testing for ill neonates provide an alternate appraisal of benefits and harms which should be incorporated into informing future parents considering these tests.
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