Should parental refusals of newborn screening be respected?

Cambridge Quarterly of Healthcare Ethics

Volumn 15, Issue 2, 2006, Pages 135-146

  Newson, Ainsley ^a  

^a IMPERIAL COLLEGE LONDON   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; CONGENITAL HYPOTHYROIDISM; CYSTIC FIBROSIS; ETHICS; GENETIC SCREENING; GENETICS; GENETICS AND REPRODUCTION; HEALTH CARE AND PUBLIC HEALTH; HUMAN; HUMAN RELATION; INFORMED CONSENT; LEGAL ASPECT; NEWBORN; PARENT; PERSONAL AUTONOMY; PHENYLKETONURIA; PHYSICIAN ATTITUDE; PROFESSIONAL PATIENT RELATIONSHIP; REVIEW; SICKLE CELL ANEMIA; TREATMENT REFUSAL;

GENETICS AND REPRODUCTION; HEALTH CARE AND PUBLIC HEALTH; PROFESSIONAL PATIENT RELATIONSHIP;

ADULT; ANEMIA, SICKLE CELL; CONGENITAL HYPOTHYROIDISM; CYSTIC FIBROSIS; GENETIC SCREENING; HUMANS; INFANT, NEWBORN; INFORMED CONSENT; PARENTS; PERSONAL AUTONOMY; PHENYLKETONURIAS; PHYSICIAN'S ROLE; PROFESSIONAL-FAMILY RELATIONS; TREATMENT REFUSAL;

EID: 33644856957     PISSN: 09631801     EISSN: 14692147     Source Type: Journal    
DOI: 10.1017/S0963180106060166     Document Type: Review

References (57)

1. For a historical review, see Guthrie R. Newborn screening: Past, present and future. In: Carter P, Wiley AM, eds. Genetic Disease: Screening and Management. New York: Alan Liss; 1986:319-39.
2. Levy HL. Newborn screening by tandem mass spectrometry: A new era. Clinical Chemistry 1998;44:2401-2;
3. Hopkins Tanne J. US Experts urge more neonatal screening for genetic disorders. British Medical Journal 2004;329:876.
4. National Institutes of Health Consensus Development Panel. National Institutes of Health consensus development conference statement: Phenylketonuria: screening and management. Pediatrics 2000;108(4):972-82.
5. This issue will arise particularly in screening for cystic fibrosis or hemoglobinopathies, where a "false positive" result discloses that the child is a carrier of the condition. In England it is standard practice to report this result to parents.
6. See, for example, Elliman DAC, Dezateux C, Bedford HE. Newborn and childhood screening programes: Criteria, evidence, and current policy. Archives of Disease in Childhood 2002;87:6-9.
7. UK National Screening Committee. Criteria for Appraising the Viability, Effectiveness and Appropriateness of a Screening Programme. Available at: http://www.nsc.nhs.uk (accessed June 28, 2004).
8. See, for example, Castellani C. Evidence for newborn screening for cystic fibrosis. Paediatric Respiratory Reviews 2003;4:278-84.
9. Sheffield Newborn Screening Laboratory. The Newborn Screening Blood Spot Test (parent information leaflet). 2004;
10. UK Newborn Screening Programme Centre. Proposed Standards and Policies for Newborn Blood Spot Screening - An Integrated Consultation. 2004. Available at: http://www. ich.ucl.ac.uk/newborn/download/proposed_standards0604.pdf (accessed July 1, 2004), at [2.2].
11. See note 8, UK Newborn Screening Programme Centre 2004:[2.2].
12. The North Western Health Board v HW and CW [2001] 3 IR 622.
13. See note 8, UK Newborn Screening Programme Centre 2004:[4.2.5].
14. Faden R, Chwalow AJ, Holtzman NA, Horn SD. A survey to evaluate parental consent as public policy for neonatal screening. American Journal of Public Health 1982;72(12):1347-52.
15. Brown AJ, Mackenzie J, Fitch M, Estell A, Aitken DA. Impact of obtaining signed consent for newborn screening tests in Scotland. Proceedings ACB National Meeting, FOCUS 2004, Birmingham, 17-20 May 2004. Screening for PKU and CHT was refused by 0.034% of parents in 2002, and 0.038% of parents in 2001.
16. Clarke AJ. Newborn screening. In: Harper PS, Clarke AJ. Genetics, Society and Clinical Practice. Oxford: Bios Scientific Publishers; 1997:107-17, at p. 108.
17. United Kingdom National Screening Committee. Second Report of the UK National Screening Committee. 2000:[23]. Available at: http://www.nsc.nhs.uk/ pdfs/secondreport.pdf (accessed June 15, 2004).
18. UK Newborn Screening Programme Centre. Newborn Bloodspot Screening in the UK: Policies and Standards. Available at: http://www.ich.ucl.ac.uk/newborn/ download/policies_standards.pdf (last accessed 6 December 05), at p. 22.
19. See note 8, UK Newborn Screening Programme Centre 2004:[4.2.1].
20. UK Newborn Screening Programme Centre. Newborn Blood Spot Screening for Your Baby (parent information leaflet). 2004.
21. Wilfond B, Thomson EJ. Models of public health genetic policy development. In: Khoury MJ, Burke W, Thomson EJ, eds. Genetics and Public Health in the 21st Century: Using Genetic Information to Improve Health and Prevent Disease. New York: Oxford University Press; 2000:61-81, at p. 63.
22. Clayton EW. Talking with parents before newborn screening. Journal of Pediatrics 2005;147:S26-S29.
23. Tluczek A, Mischler EH, Farrell PM, et al. Parents' knowledge of neonatal screening and response to false-positive cystic fibrosis testing. Journal of Developmental and Behavioural Pediatrics 1992;13:181-6.
24. Paul D. Contesting consent: The challenge to compulsory neonatal screening for PKU. Perspectives in Biology and Medicine 1999;42(2):207-19;
25. Press N, Clayton EW. Genetics and public health: Informed consent beyond the clinical encounter. In: Khoury MJ, Burke W, Thomson EJ, eds. Genetics and Public Health in the 21st Century: Using Genetic Information to Improve Health and Prevent Disease. New York: Oxford University Press; 2000:505-26, at 520-1.
26. Faden R, Holtzman NA, Chwalow AJ. Parental rights, child welfare and public health: The case of PKU screening. American Journal of Public Health 1982;72(12):1396-400.
27. See note 14, Clarke 1997.
28. Friedman Ross L. Genetic testing of children: Who should consent? In: Harris J, Burley J, eds. A Companion to Genethics. Oxford: Blackwell Publishers; 2002:114-26.
29. In most jurisdictions, this legal power is derived from both common law and legislation. Where children have sufficient capacity and understanding, they should be involved in medical decisionmaking: United Nations Convention on the Rights of the Child, GA Res 44/736 (1989), art 18.01.
30. See, for example, Downie RS, Randall F. Parenting and the best interests of minors. Journal of Medicine and Philosophy 1997;22:219-31.
31. Page E. Parental rights. Journal of Applied Philosophy 1984;1(2):197-203,
32. cited by Downie and Randall, see note 26, 1997:224.
33. Blustein J. Parents and Children: the Ethics of the family. New York: Oxford University Press; 1982.
34. Feinberg J. The child's right to an open future. In: Aiken W, LaFollette H, eds. Whose Child? Children's Rights, Parental Authority, and State Power. Totowa, N.J.: Littlefield, Adams and Company; 1980:124-53.
35. See note 29, Feinberg 1980.
36. Pollitt RJ, Green A, McCabe CJ, Booth A, Cooper NJ, Leonard JV, et al. Neonatal screening for inborn errors of metabolism: Cost, yield and outcome. Health Technology Assessment 1997;1(7): 1-202, at p. 91.
37. For systematic reviews of this literature, see note 31, Pollitt et al. 1997, Chapter 11;
38. Green JM, Hewison J, Bekker HL, Bryant LD, Cuckle HS. Psychosocial aspects of genetic screening of pregnant women and newborns: A systematic review. Health Technology Assessment 2004;8(33):1-109, Chapter 9.
39. Rothenberg MB, Sills EM. Iatrogenesis: The PKU anxiety syndrome. Journal of the American Academy for Child Psychiatry 1968;7(4):689-92.
40. See note 31, Pollitt et al. 1997;
41. note 32, Green et al. 2004:92-3.
42. See note 32, Green et al. 2004:92-3.
43. Andrews LB, Fullarton JE, Holtzman NA, Motulsky AG, eds. Assessing Genetic Risks: Implications for Health and Social Policy. Washington, D.C.: National Academy Press; 1994:100-1.
44. See note 21, Paul 1999.
45. Schoeman F. Parental discretion and children's rights: Background and implications for medical decision-making. Journal of Medicine and Philosophy 1985;10(1):45-61.
46. This standard reflects the harm principle, where parents' decisions should be accepted unless the child is placed at substantial risk of serious harm as a result; see Diekema DS. Parental refusals of medical treatment: The harm principle as threshold for state intervention. Theoretical Medicine 2004; 25:243-64.
47. Goldstein J. Medical care for the child at risk: On state supervision of parental autonomy. The Yale Law Journal 1977;86:645-70.
48. See note 39, Goldstein 1977.
49. Murray T. The Worth of a Child. Berkeley: University of California Press; 1996.
50. See note 10, North Western Health Board.
51. See note 41, Murray 1996:86.
52. Re C (A child) (HIV testing) [2000] 1 WLR 2.
53. UK Newborn Screening Programme Centre "Communication guidelines for discussing newborn blood spot screening with parents" (leaflet for midwives, no publication date given).
54. See note 8, UK Newborn Screening Programme Centre 2004:[4.2.5].
55. See also note 17, UK Newborn Screening Programme Centre 2004.
56. Beauchamp TL, Childress JF. Principles of Biomedical Ethics, 4th ed. New York: Oxford University Press; 1994:164.
57. It may be practically difficult to implement consent to screening for some conditions and refusal for others.