Fortnightly Review: Neonatal screening for sickle cell disorders: what about the carrier infants?

Laird, Linda M.; Dezateux, Carol; Anionwu, Elizabeth

doi:10.1136/bmj.313.7054.407

Cited by 48 publications

(30 citation statements)

References 33 publications

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“…This unintended information may include information about the genetic carrier status of a newborn infant, for example, as occurs in newborn sickle cell screening programmes. 236 Alternatively, it may include the detection of milder variants of 'disease' which may have little functional implications for the individual concerned but which cannot be ignored by the parents or the health professional delivering screening.…”

Section: Rationale and Criteria For Evaluating Newborn Screening Progmentioning

confidence: 99%

Newborn screening for congenital heart defects: a systematic review and cost-effectiveness analysis

Knowles¹,

Griebsch²,

Dezateux

et al. 2005

Health Technol Assess

213

143

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Section: Rationale and Criteria For Evaluating Newborn Screening Progmentioning

confidence: 99%

Newborn screening for congenital heart defects: a systematic review and cost-effectiveness analysis

Knowles¹,

Griebsch²,

Dezateux

et al. 2005

Health Technol Assess

213

143

View full text Add to dashboard Cite

show abstract

“…There is little previous evidence on acceptable and effective methods of communicating carrier status and more research is needed. 17,18 Previous research has suggested that people are reluctant to disclose carrier status when arranging marriages. [19][20][21] This study's findings differ significantly; many of the responders wanted to know about carrier status before choosing a partner and recommended openness.…”

Section: Comparison With Existing Literaturementioning

confidence: 99%

Parents' experiences of universal screening for haemoglobin disorders: implications for practice in a new genetics era

Locock

Kai²

2008

Br J Gen Pract

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“…Whether learning about a carrier state is a benefit or cost of newborn screening has been a matter of debate. Some have argued that newborn screening programs should report results on carrier status (78,79) and that these findings represent an ancillary benefit of testing (54)(55)(56). Others argue that routine reporting of carrier results violates the right ''not to know'' and is of no direct benefit to the infant (80).…”

Section: Challenges In Evaluating Newborn Screening Resultsmentioning

confidence: 99%

Genetic Screening

Burke¹,

Tarini²,

Press³

et al. 2011

Epidemiologic Reviews

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Fortnightly Review: Neonatal screening for sickle cell disorders: what about the carrier infants?

Cited by 48 publications

References 33 publications

Newborn screening for congenital heart defects: a systematic review and cost-effectiveness analysis

Newborn screening for congenital heart defects: a systematic review and cost-effectiveness analysis

Parents' experiences of universal screening for haemoglobin disorders: implications for practice in a new genetics era

Genetic Screening

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