APPENDIX.

Misleading and Good-News Content Code Names

Good-news content
    Screening: CF-carrier positive
    Screening: CF-carrier positive possible
    Screening: SCH-carrier positive
    Screening: SCH-carrier positive possible
    Screening: false-positive screening likely
    Infant is healthy now
    Infant is normal now
    Infant is growing/developing normally now
    Infant is a CF carrier
    Infant may be a CF carrier
    Infant does not have CF disease
    Infant is an SCH carrier
    Infant may be an SCH carrier
    Infant makes normal hemoglobin
    Infant does not have SCH disease
    Infant has single allele only (any)
    Infant will be healthy
    Infant will never get the disease
    Infant may never get the disease
    Nothing will change infant’s health status
    Infant will be normal
    Infant will grow or develop normally
    Infant will have normal performance (not otherwise specified)
    Infant will have normal social interaction
    Infant will be normal emotionally
    Infant will have normal play and physical performance
    Infant will be normal in school
    Infant will have normal mental performance (not otherwise specified)
    Nothing will change infant’s genetic status
    No treatment is needed
    No nutritional supplement is needed
    No monitoring is needed
    No growth monitoring is needed
    No developmental monitoring is needed
    No blood test is needed
    You’ve done a good job thus far
    Feed infant normally
    Treat infant normally (do normal things)
    Keep doing whatever you’re doing
Misleading content
    There is a screening result (not otherwise specified)
    Screening: positive (not otherwise specified)
    Screening: CF positive
    Screening: CF positive possible
    Screening: SCH positive
    Screening: SCH positive possible
    Screening: result suspicious
    Screening: result concerning
    Potential newborn screening test result disease
    Infant has CF
    Infant may have CF
    Infant has SCH
    Infant may have SCH
    Infant makes sickle hemoglobin
    Purpose of diagnostic testing: to provide early treatment
    Purpose of diagnostic testing: to provide treatment when most effective
    Infant needs treatment
    Infant may need treatment
    Infant needs nutritional supplement
    Purpose of diagnostic testing: so that infant will know status upon adulthood
    Purpose of diagnostic testing: so infant will know status when considering having children
    Infant may have a second allele
    Infant may be found to have disease
    Purpose of diagnostic testing: ensure no second mutation
    Purpose of diagnostic testing: identify early
    Purpose of diagnostic testing: identify before symptoms
    May need nutritional supplement
    Monitoring
    Infant needs monitoring (not otherwise specified)
    Infant may need monitoring (not otherwise specified)
    Infant needs growth monitoring
    Infant may need growth monitoring
    Infant needs developmental monitoring
    Infant may need developmental monitoring
    Infant needs blood tests
    Infant may need blood tests
    Infant needs to see a specialist as an infant
    Infant may need to see a specialist as an infant
    We need to do whatever is best for infant
    We need to think about what is best for infant
    Infant will develop problems if low oxygen
    Infant may develop problems if low oxygen
    Infant should avoid low oxygen
    Infant will develop problems during extreme exercise
    Infant may develop problems during extreme exercise
    Infant should avoid extreme exercise
    Infant will develop problems at high altitude
    Infant may develop problems at high altitude
    Infant should avoid high altitude
    Infant may develop problems in military training
    Infant will develop problems in military training
    Infant should avoid military training
    You should watch or keep an eye on infant (not otherwise specified)
    Call doctor if problems develop: CF or SCH
    Specified CF or SCH: problems to call doctor about