TABLE 1

Categories of Genomic Sequencing Results Ethically Obligatory to Disclose and Therefore Recommend to Parents

• Diagnoses, regardless of whether they are treatable. The latter is ethically significant because a fundamental aspect of protecting and promoting the child’s interests is classifying the patient’s condition, an especially important consideration in cases of a “diagnostic odyssey.” Genomic sequencing may bring such an odyssey to its end, which prevents further unnecessary workup of the patient, with its attendant biopsychosocial10 risks for both the patient and his or her parents/responsible caregivers.
• Risk assessment for future health: early-onset conditions, diseases, or disabilities the risk of which is modifiable. This is especially the case when the condition, disease, or disability is serious and far-reaching in its outcomes for the patient and potentially irreversible if preventive measures are not deployed.
• Risk assessment for future health: later-onset conditions, diseases, or disabilities the risk of which is modifiable during childhood. The child’s long-term health interests are protected and promoted by efforts to prevent adult-onset conditions, diseases, or disabilities for which effective prevention can begin during childhood. Such early preventive efforts may help establish long-lasting habits of self-care and seeking appropriate medical surveillance.
• Pharmacogenomic results with immediate clinical application.
• Incidental or secondary findings of life-threatening conditions.