Negligence and the communication of neonatal genetic information to parents

Medical Law Review

Volumn 20, Issue 4, 2012, Pages 604-630

  Fay, Michael ^a  

^a UNIVERSITY OF EAST ANGLIA   (United Kingdom)

Author keywords

Genetics; Medical law; Negligence; Psychiatric injury

Indexed keywords

ALPHA 1 ANTITRYPSIN;

ARTICLE; BLOOD; DUCHENNE MUSCULAR DYSTROPHY; GENETIC COUNSELING; GENETIC PREDISPOSITION; GENETICS; HUMAN; INTERPERSONAL COMMUNICATION; LEGAL ASPECT; LIFE EVENT; MALPRACTICE; NEWBORN; PARENT; PSYCHOLOGICAL ASPECT; UNITED KINGDOM;

ALPHA 1-ANTITRYPSIN; COMMUNICATION; GENETIC COUNSELING; GENETIC PREDISPOSITION TO DISEASE; GREAT BRITAIN; HUMANS; INFANT, NEWBORN; LIFE CHANGE EVENTS; MALPRACTICE; MUSCULAR DYSTROPHY, DUCHENNE; PARENTS;

EID: 84870017187     PISSN: 09670742     EISSN: 14643790     Source Type: Journal    
DOI: 10.1093/medlaw/fws024     Document Type: Article

References (99)

1. Dr Vivienne Nathanson, director of BMA Professional Activities, in 'Parents "want child gene tests"' BBC News, 18 April 2011
2. The first infant test, which was for phenylketonuria (PKU), was developed in the USA by Dr Robert Gunthrie in the 1960s.
3. In England and Scotland, neonates are screened for PKU, congenital hyperthyroidism (CHT), sickle cell disease (SCD), cystic fibrosis and medium chain acyl-CoA dehydrogenase deficiency (MCADD). In Northern Ireland, screening targets PKU, CHT, cystic fibrosis, and MCADD and, additionally, homocystinuria and tyrosinaemia, with screening for SCD planned for introduction in 2012. In Wales, screening covers PKU, CHT, and cystic fibrosis, while boys are also tested for DMD, with screening for SCD and MCADD planned for introduction in 2012.
4. Further information is available at http://www.screening.nhs.uk/newbornbloodspot-compare.
5. The most common disorders newborns are screened for in the USA are PKU, CHT, galactosemia, and SCD. Further information is available at http://genes-rus.uthscsa.edu/resources/newborn/overview.htm.
6. A recent study conducted in the USA indicated that at least one-third of parents are interested in obtaining predicative genetic testing for their children even where there is no treatment currently available for a disorder
7. See BA Tarini and others, 'Parents' Interest in Predictive Genetic Testing for their Children when a Disease has no Treatment' (2012) Paediatrics 129(2) 290-298
8. Communicating genetic information has an inherent risk of psychiatric injury: see, for example, E Almqvist and others, 'AWorldwide Assessment of the Frequency of Suicide, Suicide Attempts, or Psychiatric Hospitalization after Predictive Testing for Huntington's Disease' (1999) 64 Am J Hum Gen 1293
9. 1 KB 141
10. AC 410
11. All ER 557
12. EWCA Civ 697, [2003] All ER (D) 341 (Mar)
13. 1 AC 310
14. Farrell v Avon Health Authority [2001] Lloyd's Rep Med 458 (QB); Allin v City & Hackney Health Authority [1996] 7 Med Law Rev 167
15. Although, if the impact of the news is needlessly exacerbated, a duty may arise, see Furniss v Fitchett [1958] NZLR 396. In AB v Tameside & Glossop Health Authority [1997] PNLR 140, the defendants conceded that a duty of care was owed in respect of the manner in which claimants were informed they had been treated by a clinician who was HIV positive and, thus, were at risk of contracting the condition.
16. See Farrell v Avon Health Authority, n 12; AB v Leeds Teaching Hospital [2005] QB 506; Tredget & Tredget v Bexley Health Authority [1994] 5 Med Law Rev 178
17. It is beyond the scope of this paper to consider whether or not an assumption of responsibility approach offers a clear rationalisation of the duty of care in general
18. For a detailed general analysis of assumption of responsibility and the duty of care see, K Barker, 'Unreliable Assumptions in the Modern Law of Negligence' (1993) 109 LQR 461
19. For example, an assumption of responsibility was the basis of the defendant's duty in Creutzfeldt-Jakob Disease Litigation, Group B Plaintiffs v Medical Research Council [2000] Lloyd's Rep Med 161; cf Grieves v F T Everard & Sons Ltd [2007] UKHL 39
20. EWCACiv 6. The claimant suffered from a psychiatric injury after experiencing the suicides of inmates during the course of his employment with the prison service. The Home Office had specifically recognised the psychiatric risks to individuals in the claimant's position and implemented a counselling service. The implementation of the service was, however, negligent and the claimant was able to succeed as a result.
21. A coarse rattling sound as a person breathes-likened to snoring, wheezing, and (strangely) the sound of a donkey's hooves as it runs-caused by mucus secretions in the bronchial airways
22. A clicking, rattling, or crackling noise made by a person's lungs during inhalation when afflicted with a respiratory infection, typically detected by stethoscope
23. TF McNeil and others, 'Psychosocial Effects of Screening for Somatic risk: The Swedish a1-Antitrypsin Experience' (1988) 43 Thorax 505, 505
24. GT Laurie, Genetic Privacy: AChallenge to Medico-legal Norms (Cambridge University Press, Cambridge 2002) 124
25. McNeil and others, n 20, 505-6
26. An attitude survey conducted in Cardiff had previously indicated that 94% of parents would accept neonatal screening for DMD
27. See RA Smith and others, 'Attitudes of Mothers to Neonatal Screening for Duchenne Muscular Dystrophy' (1990) 300 BMJ 1112
28. The attitudes of parents to the genetic screening of children has also been examined recently in the USA; see Tarini and others, n 5
29. E Parsons, D Bradley, and C Clarke, 'Disclosure of Duchenne Muscular Dystrophy after Newborn Screening' (1996) 74 Arch Dis Child 550
30. See 'Meeting Discusses Newborn Screening for Duchenne Muscular Dystrophy' Muscular Dystrophy Campaign, 31 March 2011, http://www.muscular-dystrophy.org/research/news/3536. accessed 26 October 2011.
31. For example, see House of Lords Science and Technology Committee, Genomic Medicine (HMSO, London 2009)
32. See also C Wright and others, Next Steps In The Sequence: the Implications of Whole Genome Sequencing for Health in the UK (PHG Foundation, Cambridge, 2011),http://www.phgfoundation.org/reports/10364/. accessed 26 October 2011.
33. See 'Newborn Screening to be Expanded in Pilot Study' BBC News, 8 April 2012, http://www.bbc.co.uk/news/health-17628169. accessed 11 April 2012.
34. Furthermore, parental interest in neonatal testing appears high (see n 5 and n 22). It is also logical that-as our understanding of genetics develop and new therapies become available-childhood screening will offer the greatest opportunity for pre-emptive or structured intervention regarding late onset disorders.
35. R Mulheron, Medical Negligence: Non-Patient and Third Party Claims (Ashgate, Farnham 2011) 264
36. Tredget & Tredget v Bexley Health Authority [1994] 5 Med Law Rev 178 per White J at 179
37. White v Chief Constable of South Yorkshire [1999] 2 AC 455, HL, per Lord Hoffmann at 511
38. Tredget, n 34, per White J at 179
39. R Mulheron, 'The "Primary Victim" in Psychiatric Illness Claims: Reworking the "Patchwork Quilt"' (2008) 19 King's LJ 81, 82
40. 2 AC 310
41. Lloyd's Rep Med 49
42. 5 Med Law Rev 178
43. Walters, n 42, per Ward LJ at [35]
44. Sion v Hampstead Health Authority [1994] 5 Med Law Rev 170
45. Walker v Northumberland County Council [1995] 1 All ER 737; Hatton v Sutherland [2002] 2 All ER 11; Daw v Intel Corp [2007] EWCA Civ 70; Hartman v South Essex Mental Health and Community Care NHS Trust [2005] ICR 782
46. [2001] 57 BMLR 158
47. McLoughlin v O'Brian [1983] AC 410
48. Lloyd's Rep Med 458
49. 7 Med Law Rev 167
50. All ER (D) 218. The diagnosis was subsequently discovered to be erroneous.
51. N Mullany, 'Liability for Careless Communication of Traumatic Information' (1998) 114 LQR 380, 385
52. In Alcock, Lord Oliver (at 412) was of the opinion that a situation could arise where there was 'no primary 'victim' in fact.' He thought it 'readily conceivable that a parent may suffer injury, whether physical or psychiatric, as a result of witnessing a negligent act which places his or her child in extreme jeopardy but from which, in the event, the child escapes unharmed' (a situation that arose in Hambrook v Stokes Bros [1925] 1 KB 141). In Lord Oliver's example, the child is a theoretical primary victim, with no actionable claim.
53. See n 42
54. See n 53
55. See n 55
56. See Page v Smith [1996] AC 155; White v Chief Constable of South Yorkshire [1999] 2 AC 455; W & Others v Essex County Council [2001] 2 AC 592; Grieves v F T Everard & Sons Ltd [2007] UKHL 39
57. See Alcock n 11, per Lord Oliver at 406-8; also, regarding 'elevated primary victims', see Mulheron, n 33, 278-9
58. Page v Smith, n 59. The claimant did not need to prove that psychiatric injury was a foreseeable consequence of the defendant's negligence; it was enough to prove that physical injury was foreseeable.
59. AB v Leeds Teaching Hospital [2005] QB 506; Farrell v Avon Health Authority, n 51. Note that following the House of Lords decision in Grieves v Everard, n 59, primary victims are required to demonstrate 'reasonable phlegm' in 'fear for the future' litigation.
60. See n 46
61. Mulheron, n 33, 275
62. See n 43. The claimants' son was negligently delivered by the defendants amid circumstances described as chaos and pandemonium. The boy was born in a distressed state-being severely asphyxiated-and required immediate resuscitation. He died from his injuries 48 h later. The father was present throughout the birth and was requested by the defendants to actively encourage his wife's efforts. Both parents sustained psychiatric injury-pathological grief reaction-for which they successfully recovered.
63. Lloyd's Rep Med 458 at 466
64. QB 506
65. Mulheron, n 33, 277
66. See n 55
67. 2 All ER 470 n. The claimant's son died on a ship owned by the defendants and the claimant was later informed of the incident, suffering psychiatric injury.
68. Lloyd's Rep Med 389. The claimant was informed by telephone of the in utero death of his child following negligent treatment of the mother during preparation for a caesarean section. Similarly, in Powell v Boladz [1998] Lloyd's Rep Med 116, the Court of Appeal held that a clinician did not owe a duty to the relatives of patients to whom he relayed distressing news.
69. Mount Isa Mines Ltd v Pusey (1970) 125 CLR 383, per Windeyer J. at 407; Tame v New South Wales (2002) 211 CLR 317.
70. Furniss v Fitchett [1958] NZLR 396; a doctor negligently issued a certificate to the claimant's husband alleging she was a paranoiac, which the husband subsequently produced in court proceedings against him for maintenance. Disclosure of the certificate's contents caused shock to the claimant and she recovered for psychiatric injury.
71. PNLR 140
72. HCA 35
73. [2011] ONCA 55
74. An estimated 1 in 10 of latent infections progress to an active infection, which, if left untreated, is fatal in greater than 50% of cases
75. Healey, n 84, per Sharpe JA at 33
76. Mullany, n 54, 381
77. As it was, the counselling provisions were offered, but not set up, at the time the letters warning of the HIV infection were distributed
78. 1 WLR 1421
79. QB 464; the claimants were a husband and wife who had been threatened with violence and arson after confidential documents were stolen from a police vehicle, which contained information regarding the criminals that the husband had provided to the police
80. Lloyd's Rep Med 161
81. CJD is caused by unconventional transmissible agents called prions, which are misfolded proteins that replicate by converting properly folded proteins. The disease gained notoriety in the 1990s when it emerged that prions causing bovine spongiform encephalopathy (BSE, commonly known as 'mad cow disease') in cattle also caused a variant of CJD in humans.
82. Australian jurisprudence tackled a comparable scenario in APQ v Commonwealth Serum Laboratories Ltd 2005 WL 237524 (VSC), 3 VR 633
83. AC 465
84. Mullany, n 54, 381
85. 2 AC 605
86. Mullany, n 54, 382
87. QB 506 at 201
88. 39 BMLR 35, per Stuart-Smith LJ at 46
89. See Ravenscroft, n 75, for the apparent legal position of the 'pure' messenger; cf AB v Tameside, n 79, where a comparable point was conceded by the defendant health-care provider regarding a duty to communicate distressing information
90. For example, Ravenscroft, n 75
91. Hatton v Sutherland [2002] EWCA Civ 76, per Hale LJ at 29
92. Or promise to take such steps, as in Walker v Northumberland County Council [1995] 1 All ER 737
93. EWCA Civ 6
94. See n 1
95. Bolam v Friern Hospital Management Committee [1957] 1 WLR 582
96. The Bolam test has not been applied to all types of medical negligence claims and deviation is particularly noticeable in litigation concerning the disclosure of medical risks such as Pearce v United Bristol Healthcare NHS Trust [1999] 1 PIQR 53; Chester v Afshar [2004] UKHL 1, [2005] 1 AC 134; Birch v University Collegen London Hospital NHS Foundation Trust [2008] EWHC 2237 (QB), (2004) 104BMLR 168 (QB); Nadine Montgomery v Lanarkshire Health Board [2010] CSOH 104
97. The contrasting fortunes of the Swedish and Welsh neonatal screening programmes provide a clear example of the impact of counselling
98. Hotson v East Berkshire Health Authority [1987] 2 All ER 909; Gregg v Scott [2005] UKHL 2
99. 1 WLR 1