Imparting carrier status results detected by universal newborn screening for sickle cell and cystic fibrosis in England: A qualitative study of current practice and policy challenges

BMC Health Services Research

Volumn 7, Issue , 2007, Pages

  Parker, Hilda ^a   Qureshi, Nadeem ^a   Ulph, Fiona ^a   Kai, Joe ^a  

^a UNIVERSITY OF NOTTINGHAM   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CYSTIC FIBROSIS; FUNDING; GENERAL PRACTITIONER; HEALTH CARE POLICY; HEALTH PRACTITIONER; HEALTH PROGRAM; HEALTH SERVICE; HETEROZYGOTE DETECTION; HUMAN; INTERPERSONAL COMMUNICATION; INTERVIEW; MEDICAL INFORMATION; MEDICAL SPECIALIST; METHODOLOGY; NEWBORN SCREENING; OCCUPATION; PARENT; PREVALENCE; PROFESSIONAL PRACTICE; QUALITATIVE ANALYSIS; THEMATIC ANALYSIS; WORKLOAD; ADULT; GENETIC SCREENING; GENETICS; HETEROZYGOTE; HUMAN RELATION; NEWBORN; NONBIOLOGICAL MODEL; PARENTAL NOTIFICATION; PSYCHOLOGICAL ASPECT; PUBLIC HEALTH; SICKLE CELL TRAIT; UNITED KINGDOM;

ADULT; CARRIER STATE; CYSTIC FIBROSIS; ENGLAND; GENETIC SCREENING; HEALTH POLICY; HUMANS; INFANT, NEWBORN; MODELS, ORGANIZATIONAL; NATIONAL HEALTH PROGRAMS; NEONATAL SCREENING; PARENTAL NOTIFICATION; PARENTS; PROFESSIONAL-FAMILY RELATIONS; SICKLE CELL TRAIT; TRUTH DISCLOSURE;

EID: 38949185759     PISSN: None     EISSN: 14726963     Source Type: Journal    
DOI: 10.1186/1472-6963-7-203     Document Type: Article

References (24)

1. NHS screening website. http://www.screening.nhs.uk/bloodspot/index.htm
2. NHS Sickle Cell & Thalassaemia Screening Programme. http://www.sickleandthal.org.uk
3. Cystic Fibrosis Programme. http://www.ich.ucl.ac.uk/newborn/cf/index.htm
4. Initially misleading communication of carrier results after newborn genetic screening. A La Pean MH Darrell, Pediatrics 2005 116 6 1499 1505 10.1542/peds.2005-0449 16322177
5. Screening and the new genetics; a public health perspective on the ethical debate. DH Stone S Stewart, Journal of Public Health Medicine 1996 18 1 3 5 8785072
6. Fortnightly Review: Neonatal screening for sickle cell disorders: what about the carrier infants? L Laird C Dezateux EN Anionwu, BMJ 1996 313 7054 407 411 8761233
7. Newborn screening for cystic fibrosis: the practical implications. KW Southern, J R Soc Med 2004 97 Suppl 44 57 59 15239296
8. Disclosing to parents newborn carrier status following routine blood spot screening. S Oliver T Lempert R Stewart J Kavanagh C Dezateux, London, EPPI-Centre, Social Science Research Unit, Institute of Education, University of London 2004
9. Screening programme highlights wider issues for public health, p.10-11, 2007. A Streetly A Mackie, http://www.fph.org.uk/resources/newsletters/phcom/ archive/2007/phcom_march07.pdf
10. Newborn blood spot screening in the UK: Health professional handbook. UK Newborn Screening Programme Centre: http://www.screening.nhs.uk/cpd/ professional_handbook.pdf
11. Personal communication, Dr Jim Bonham, Director of Newborn Screening Laboratory, Sheffield.
12. Review of resources currently available to support Haemoglobinopathy Screening programmes in England, NHS Sickle Cell and Thalassaemia Screening Programme. C Gill, 2004 http://www.sickleandthal.org.uk/Documents/ ServicesReport.pdf
13. NIH consensus statement: Newborn Screening for Sickle Cell Disease and Other Hemoglobinopathies. http://consensus.nih.gov/1987/ 1987ScreeningSickleHemoglobinopathies061html.htm
14. Communication of carrier status information following newborn screening: descriptive study of current practice, methods and experience. http://www.ncchta.org/project/1510.asp
15. Guidelines for implementation of cystic fibrosis newborn screening programs: Cystic Fibrosis Foundation workshop reports. AM Comeau FJ Accurso TB White PW Campbell G Hoffman RB Parad BS Wilfond M Rosenfeld MK Sontag J Massie PM Farrell BP O'Sullivan, Pediatrics 2007 119 2 e495 518 10.1542/peds.2006-1993 17272609
16. The first 2.5 years of experience with cystic fibrosis newborn screening in an ethnically diverse population. R Giusti A Badgwell AD Inglesias New York State Cystic Fibrosis Newborn Screening Consortium, Pediatrics 2006 119 2 460 467 10.1542/peds.2006-1415
17. A survey of newborn screening for cystic fibrosis in Europe. K Southern A Munck R Pollit G Travert L Zanolla J Dankert-Roelse C Castellani, Journal of Cystic Fibrosis 2007 6 57 65 10.1016/j.jcf.2006.05.008 16870510
18. Implications of carrier identification in newborn screening for cystic fibrosis. EP Parsons AJ Clarke DM Bradley, Archives of Disease in Childhood Fetal Neonatal Ed 2003 88 467 471 10.1136/fn.88.6.F467
19. Genetic counselling and neonatal screening for cystic fibrosis: an assessment of the communication process. DJ Ciske A Haavisto A Laxova LZM Rock PM Farrell, Pediatrics 2001 107 4 699 705 10.1542/peds.107.4.699 11335747
20. Recommendations for effective newborn screening communication: Results of focus groups with parents, providers, and experts. TC Davis SG Humiston CL Arnold JA Bocchini PF Bass EM Kennen A Bocchini D Williams P Kyler M Lloyd-Puryear, Pediatrics 2006 117 5 s326 340 16735260
21. Mothers' accounts of screening newborn babies in Wales (UK). EP Parsons JT King DM Bradley, Midwifery 2007 23 59 65 10.1016/j.midw.2006.05.008 16930787
22. Parental attitudes to the identification of their infants as carriers of cystic fibrosis by newborn screening. S Lewis L Curnow M Ross J Massie, Journal of Paediatrics and Child Health 2006 42 533 537 10.1111/j.1440-1754.2006.00917.x
23. Neonatal screening: cost-effectiveness of nurse follow up. SC Davies E Cronin M Gill P Greengross M Hickman C Normand, Screening for sickle cell disease and thalassaemia: A systematic review with supplementary research Health Technology Assessment 2000 4: 87
24. Sickle cell screening makes genetic counselling everybody's business. Z Kmietowicz, British Medical Journal 2006 332 570 16528080 10.1136/bmj.332.7541. 570