![]() 1 However, screening technologies that identify affected infants also identify virtually all SCD carriers. Screening for SCD is justified by evidence that early treatment with prophylactic penicillin leads to reduced mortality in affected children. ![]() NBS for sickle cell disorders (SCDs) provides a classic example. Traditionally designed to reduce mortality and morbidity in affected children, screening programs may also generate incidental information, such as carrier status (ie, unaffected heterozygotes). Newborn screening (NBS) programs assess infants who seem to be well to identify those few at an increased risk of having a disorder. Disclosure policy related to incidentally generated infant carrier results needs to account for these complex realities. We conclude that many interpretations of carrier status are in circulation, failing to fit neatly into the categories of ‘clinically significant' or ‘benign.' This creates challenges for communicating clearly with parents – challenges exacerbated by inconsistent messages from screening programs regarding the significance of sickle cell carrier status. Meanwhile, providers referenced research knowledge to offer an equivocal assessment of the possibility and significance of clinically symptomatic carrier status. In addition, consumers and advocates who were most informed about the disease articulated insistent yet dissonant claims of clinical significance. However, some uncertainty persisted among lay consumers in the form of conjecture or doubt. Lay and provider participants generally believed that carrier results were clinically insignificant. In this paper, we report the results of (i) qualitative interviews with health-care providers, advocates and parents of carrier infants and (ii) focus groups with new parents and individuals active with the sickle cell community. We conducted a study of consumer and provider attitudes to inform policy on disclosure. Expansion of the NBS panel in Ontario, Canada in 2006 to include sickle cell disorders drew attention to the policy challenge of incidental carrier results. Although carrier status is generally understood to be clinically benign, concerns persist that parents may misunderstand its meaning, with deleterious effects on children and their families. The expansion of newborn screening (NBS) is increasing the generation of incidental results, notably carrier results.
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