Risks and Considerations

If you are thinking about participating in BRIDGES-NBS, it’s important to understand both the potential benefits and risks.

Possible benefits

  • Identifying a risk for a genetic condition through BRIDGES-NBS may allow for earlier monitoring or treatment, which could improve a baby’s health.

  • Participation may also help improve newborn screening for future families.

Possible risks and considerations

  • Learning that your baby may be at increased risk for a genetic condition can feel stressful, upsetting, or confusing.

  • Results may be unclear, may identify a risk for a condition that never develops, or may miss some conditions. Not all genetic conditions are included in this screening test.

  • Some babies may need additional testing. This may include testing parents and could reveal new information about the health or relationships of parents, siblings, or other family members.

We also take careful steps to protect your baby’s privacy and genetic information

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Your baby’s genetic information is personal, and protecting it is a priority.

Your baby’s DNA, individual genomic data, and reports will not be shared outside the BRIDGES-NBS study, except with your baby’s healthcare provider and the clinical laboratory (GeneDx) conducting the genome sequencing.

Additionally, if you consent, your baby’s de-identified genomic data (with all identifying information removed), may be shared with researchers studying genetic conditions and newborn screening and with federally funded research databases.

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GeneDx and BRIDGES-NBS may not share or sell your baby's DNA or genomic data.

Stored DNA, genomic data, and study reports will be destroyed by GeneDx five years after the study ends.

Your baby’s genetic information is protected by a federal law called GINA (Genetic Information Nondiscrimination Act), which prevents discrimination by health insurers and employers with 15 or more employees (but does not apply to life, disability, or long-term care insurance). Individuals receiving health insurance through the US military are protected from health insurance discrimination, but military employment decisions may be impacted by genetic information.