Newborn screening for hemoglobinopathies: the benefit beyond the target.

Grover, Ranjeet; Newman, S P; Wethers, Doris L.; Anyane‐Yeboa, Kwame; Pass, Kenneth A.

doi:10.2105/ajph.76.10.1236

Cited by 16 publications

(8 citation statements)

References 7 publications

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“…With respect to prenatal diagnosis, a large majority would hypothetically use prenatal diagnosis to identify an affected baby but a minority among those interested would use the information generated to terminate an affected pregnancy. Data gleaned from a survey question reflecting actual pursuit of prenatal diagnosis for SCD indicates that 14 of 22 (64%) at-risk couples in fact pursued prenatal diagnosis (Grover et al 1986). In the CF population, intent to pursue and actual pursuit of prenatal diagnosis for disease appears to be less frequent.…”

Section: Discussionmentioning

confidence: 99%

“…Parsons et al (2003), however, found that as soon as 6 months postdisclosure, there was no evidence that the mother-baby relationship had been affected by carrier identification or that carrier status was seen by parents as a problem in terms of spoiled identity. Finally, while it is suggested that the frequency of identifying non-paternity by disclosing carrier results generated through newborn screening might be as low as 1.8% (Grover et al 1986), there is no evidence specific to the context of newborn screening that reflects the harm(s) that this revelation is thought to cause.…”

Section: (B) Psychological Benefits and Harms Associated With Learninmentioning

confidence: 99%

“…In this sample, all four families pursued carrier testing. Parents' pursuit of carrier testing appears to be motivated by their sense of responsibility to pass information on to their child and family members in order to equip them with knowledge that they may perceive as valuable for the future (Parsons et al 2003).With respect to the impact of carrier knowledge generated through newborn screening on reproductive attitudes and behaviors in parents, Grover et al (1986) described a cohort of 4,565 infants identified with SCD trait through newborn screening. Of the 2,190 parents tested and counseled subsequent to this notification, 39 were found to be at risk for having a child with sickle cell disease.…”

Section: (B) Psychological Benefits and Harms Associated With Learninmentioning

confidence: 99%

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A Systematic Review of the Effects of Disclosing Carrier Results Generated Through Newborn Screening

Hayeems

Bytautas

Miller

2008

Journal of Genetic Counseling

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Evidence on the effects of disclosing carrier results identified through newborn screening (NBS) is needed to develop effective strategies for managing these results, and to inform debate about contradictory policies governing genetic testing in minors in the context of NBS relative to clinical care. This is likely to be even more important as technological opportunities for carrier identification through NBS increase. We report the results of a systematic review of evidence related to the generation of carrier results through NBS to summarize what is known about: (1) the outcomes associated with these results; (2) the best strategies for providing information and follow-up care to parents; and (3) the impact they have on reproductive decision-making. Our study expands the existing body of knowledge and identifies gaps in the evidence base. As key players in the management of carrier results clinically, genetic counselors are well positioned to engage in formative research and policy development in this area.

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Section: Discussionmentioning

confidence: 99%

Section: (B) Psychological Benefits and Harms Associated With Learninmentioning

confidence: 99%

Section: (B) Psychological Benefits and Harms Associated With Learninmentioning

confidence: 99%

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A Systematic Review of the Effects of Disclosing Carrier Results Generated Through Newborn Screening

Hayeems

Bytautas

Miller

2008

Journal of Genetic Counseling

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“…Existing research that has used quantitative methods to examine parents' experiences has tended to measure service use, 74,[89][90][91] or has used methods that have limited parents' ability to convey their experience or understanding of results, 41,63,67,74,92 while research relating to SC is particularly limited 67 (see Appendix 1).…”

Section: Parents' Experiences Of Newborn Screeningmentioning

confidence: 99%

Communication of carrier status information following universal newborn screening for sickle cell disorders and cystic fibrosis: qualitative study of experience and practice

Kai

Ulph²,

Cullinan³

et al. 2009

Health Technol Assess

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How to obtain copies of this and other HTA programme reports An electronic version of this publication, in Adobe Acrobat format, is available for downloading free of charge for personal use from the HTA website (www.hta.ac.uk). A fully searchable CD-ROM is also available (see below).Printed copies of HTA monographs cost £20 each (post and packing free in the UK) to both public and private sector purchasers from our Despatch Agents.Non-UK purchasers will have to pay a small fee for post and packing. For European countries the cost is £2 per monograph and for the rest of the world £3 per monograph.You can order HTA monographs from our Despatch Agents:-fax (with credit card or official purchase order) -post (with credit card or official purchase order or cheque) -phone during office hours (credit card only).Additionally the HTA website allows you either to pay securely by credit card or to print out your order and then post or fax it. Contact details are as follows: Payment methods Paying by chequeIf you pay by cheque, the cheque must be in pounds sterling, made payable to Direct Mail Works Ltd and drawn on a bank with a UK address. Paying by credit cardThe following cards are accepted by phone, fax, post or via the website ordering pages: Delta, Eurocard, Mastercard, Solo, Switch and Visa. We advise against sending credit card details in a plain email. Paying by official purchase orderYou can post or fax these, but they must be from public bodies (i.e. NHS or universities) within the UK. We cannot at present accept purchase orders from commercial companies or from outside the UK. How do I get a copy of HTA on CD?Please use the form on the HTA website (www.hta.ac.uk/htacd.htm). Or contact Direct Mail Works (see contact details above) by email, post, fax or phone. HTA on CD is currently free of charge worldwide.The website also provides information about the HTA programme and lists the membership of the various committees. HTA NIHR Health Technology Assessment programmeT he Health Technology Assessment (HTA) programme, part of the National Institute for Health Research (NIHR), was set up in 1993. It produces high-quality research information on the effectiveness, costs and broader impact of health technologies for those who use, manage and provide care in the NHS. 'Health technologies' are broadly defined as all interventions used to promote health, prevent and treat disease, and improve rehabilitation and long-term care. The research findings from the HTA programme directly influence decision-making bodies such as the National Institute for Health and Clinical Excellence (NICE) and the National Screening Committee (NSC). HTA findings also help to improve the quality of clinical practice in the NHS indirectly in that they form a key component of the 'National Knowledge Service'. The HTA programme is needs led in that it fills gaps in the evidence needed by the NHS. There are three routes to the start of projects. First is the commissioned route. Suggestions for research are actively sought from people working in t...

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“…Mortality rates of 30% [8] and 14% [21] have been reported for newborn screening programs in which neither education nor comprehensive medical follow-up was provided as part of the screening effort.…”

Section: Discussionmentioning

confidence: 99%

Incidence of Major Infection in Sickle Cell Pediatric Patients at Qatif Central Hospital

et al. 1991

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Newborn screening for hemoglobinopathies: the benefit beyond the target.

Cited by 16 publications

References 7 publications

A Systematic Review of the Effects of Disclosing Carrier Results Generated Through Newborn Screening

A Systematic Review of the Effects of Disclosing Carrier Results Generated Through Newborn Screening

Communication of carrier status information following universal newborn screening for sickle cell disorders and cystic fibrosis: qualitative study of experience and practice

Incidence of Major Infection in Sickle Cell Pediatric Patients at Qatif Central Hospital

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