Parents' Views on Genetic Testing for Kids with Rare Neurological Issues

Key Findings

• Study Scope: 101 parents of children with conditions like cerebral palsy, epilepsy, and developmental delays were surveyed.
• Positive Perceptions: 82% to 91% of parents saw benefits in CGT, including:
• Explaining their child's condition
• Supporting research
• Guiding treatment
• Preventing recurrence

• Aiding family planning

• Negative Concerns: Opinions varied on potential downsides like:
• Discrimination
• Parental worry
• Family conflicts

Influencing Factors

• Education Level:
• Parents with higher education were less likely to believe CGT could:
• Provide a causal explanation
• Support research

• Aid family planning

• Child's Symptoms:
• Specific symptoms (severe language delay, epilepsy, autism, microcephaly) influenced attitudes toward CGT.

Conclusion

• General Positivity: Most parents have favorable views on CGT.
• Individual Differences: Education and symptom severity play significant roles in shaping opinions.
• Healthcare Considerations: Providers should tailor discussions on genetic testing to individual family circumstances.