Non-disclosure of genetic risks: The case for developing legal wrongs

Medical Law International

Volumn 16, Issue 1-2, 2016, Pages 3-26

  Chico, Victoria ^a  

^a UNIVERSITY OF SHEFFIELD   (United Kingdom)

Author keywords

confidentiality; Genetic risk; legal harm; legal wrong; non disclosure

Indexed keywords

CONFIDENTIALITY; COURT; DOCTOR PATIENT RELATION; ENGLAND; GENETIC RISK; HUMAN; PERCEPTION; RELATIVE; TRUST; WALES;

EID: 84987858832     PISSN: 09685332     EISSN: 20479441     Source Type: Journal    
DOI: 10.1177/0968533216653440     Document Type: Review

References (84)

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2. ABC v. St Georges Healthcare NHS Trust [2015] EWHC 1394 (QB).
3. ABC, para 13.
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8. The claimant also alleged psychiatric harm although no evidence of this was presented in the case. The psychiatric harm claim is not considered here as it is the focus of an extended case comment I have written; V. Chico, 'Doctors Under No Duty to Warn Patients' Relatives of Genetic Risks', Professional Negligence 32 (2016), pp. 82-85.
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15. McFarlane Lord Steyn 82.
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17. Throughout the judgments of Brooke L.J. and Hale L.J. Parkinson, para 79.
18. Parkinson, para 95.
19. Rees Lord Bingham, para 8.
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22. For the importance of this in the context of a legal challenge see Re Y and Z (Minors) [2013] EWHC 953 (Fam).
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24. ABC, para 2.
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27. N. Priaulx, 'Joy to the World! A (Healthy) Child is Born! Reconceptualizing "Harm" in Wrongful Conception', Social and Legal Studies 13 (2004), pp. 5-26
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29. Rees Lord Scott, para 356.
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31. Other cases that suggest that this might be a possibility are Chester v. Afshar [2004] UKHL 41
32. Yearworth and Others v. North Bristol NHS Trust [2009] EWCA Civ 37.
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47. See for example my previous work on this issue V. Chico, 'Requiring Genetic Knowledge: A Principled Case for Support', Legal Studies 35 (2015), pp. 532-550.
48. Available at: http://www.genomicsengland.co.uk/taking-part/patient-information-sheetsand- consent-forms/ (accessed 18 March 2016).
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55. See in particular G. Laurie, Genetic Privacy: A Challenge to Medico-legal Norms. (Cambridge: Cambridge University Press, 2002).
56. T.J. Heaton and V. Chico, 'Attitudes Towards the Sharing of Genetic Information with at- Risk Relatives: Results of a Quantitative Survey', Human Genetics 135 (2016), pp. 109-120.
57. T.J. Heaton and V. Chico, 'Attitudes Towards the Sharing'.
58. ABC, para 13.
59. See, for example, G. Laurie, 'Genetic Privacy' and R. Chadwick, 'Genetic Diagnostic Information and the Duty of Confidentiality', Medical Law International 1 (1993), pp. 73-95.
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61. See, for example, K. Offit, et al., 'The "Duty to Warn';
62. B.M. Knoppers, Y. Joly, J. Simard, et al. 'The Emergence of an Ethical Duty to Disclose Genetic Research Results: International Perspectives', European Journal of Human Genetics 14 (2006), pp. 1170-1178.
63. Personal communication with a geneticist at The British Society for Genetic Medicine 22-24th September 2014, Arena and Convention Centre, Liverpool.
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66. R.B. Dugan, G.L. Wiesner, E.T. Juengst, et al. 'Duty to Warn at-risk Relatives for Genetic Disease: Genetic Counselors' Clinical Experience', American Journal of Medical Genetics (Sem Med Genet) 119C (2003), pp. 27-34.
67. M.J. Falk, R.B. Dugan, M.A. O'Riordan, et al. 'Medical Geneticists' Duty to Warn at-risk Relatives for Genetic Disease', American Journal of Medical Genetics 120A (2003), pp. 374-380.
68. R. Gilbar, 'Communicating Genetic Information in the Family: The Familial Relationship as the Forgotten Factor', Journal of Medical Ethics 33 (2007), pp. 390-393.
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71. See for example R. Chadwick, M. Levitt and D. Shickle (eds) The Right to Know and the Right Not to Know Genetic Privacy and Responsibility (Cambridge: Cambridge University Press, 2014);
72. R. Andorno, 'The Right Not to Know: An Autonomy Based Approach', Journal of Medical Ethics 30 (2004), pp. 435-439;
73. J. Raikka, 'Freedom and a Right (Not) to Know', Bioethics 12 (1998), pp. 49-63;
74. R. Chadwick, M. Levitt and D. Shickle (eds) The Right to Know and the Right Not to Know (Aldershot: Avebury, 1997);
75. Heaton and Chico, 'Attitudes Towards Sharing'. See also Dheensa et al., 'Health-care Professionals' Responsibility to Patients' Relatives in Genetic Medicine: A Systematic Review and Synthesis of Empirical Research', Genetics in Medicine 18 (2016), pp. 290-301.
76. S. Dheensa et al., 'Health-care Professionals'.
77. Heaton and Chico, 'Attitudes Towards the Sharing'.
78. D.T. Gilbert, E.C. Pinel, T.D. Wilson, et al. 'Immune Neglect: A Source of Durability Bias in Affective Forecasting' Journal of Personality and Social Psychology 75 (1998), pp. 617-638.
79. For a more detailed account of the psychological immune system, see J.A. Blumenthal, 'Law and the Emotions: The Problems of Affective Forecasting', Indiana Law Journal 80 (2004), pp. 155-238;
80. D.T. Gilbert, E. Driver-Linn and T.D. Wilson, 'The Trouble with Vronsky: Impact Bias in the Forecasting of Future Affective States', in L.F. Barrett and P. Salovey (eds) The Wisdom in Feeling: Psychological Processes in Emotional Intelligence (New York: Guilford Press, 2002), pp. 114-143.
81. See my extended case comment on ABC which focuses on the potential psychiatric harm claim in the case. V. Chico, 'Doctors Under no Duty'.
82. R.C. Green, J.S. Berg, W.W. Grody, et al., 'ACMG Recommendations for Reporting of Incidental Findings in Clinical Exome and Genome Sequencing', Genetics in Medicine 15 (2013), pp. 565-574.
83. Similar exercises in the United Kingdom have led to much smaller lists of preventable conditions. Genomics England allows patients to opt-in to feedback of a small number of looked-for additional clinically important findings. Available at: http://www.genomicsengland.co.uk/wpcontent/uploads/2015/03/GenomicEnglandProtocol-030315- v8.pdf (accessed 16 February 2016).
84. See for example, R. Gilbar and C. Foster, 'Doctors Liability to the Patient in Genetic Medicine', ABC v. St George's Healthcare NHS trust [2015] EWHC 1394 (QB) Medical Law Review 24 (2015), pp 112-123.