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Genetic testing of children for familial cancers: a comparative legal perspective on consent, communication of information and confidentiality

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Abstract

Genetic testing of children is the subject of ethical and legal debate. On the one hand, the literature emphasises the personal interests and rights of the individual child. On the other, the interests of the parents and the family as a whole are discussed. English law relies by and large on a patient-centred approach where the child has some say about his/her medical care. The view reflected in Anglo-American guidelines, more specifically, is that testing is potentially harmful and may compromise the child’s autonomy and confidentiality. This explains the reluctance to submit children to predictive genetic testing. An analysis of Israeli law, however, reflects a different approach, where the benefit to the child is defined more widely. This accords with the general communitarian position adopted by Israeli law, a legal position that reflects the duality of Israeli society in simultaneously promoting both fundamental human rights and family ethics. In practice, however, there may be little difference, as children in both jurisdictions have access to similar genetic services.

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Notes

  1. Although, the central focus on this article is hereditary cancers its context is broader and can be applied to other genetic conditions.

  2. If a legal problem arises (e.g. refusal of testing), general principles of medical law will be applied. See below for further legal analysis.

  3. E.g. in the US: the Institute of Medicine Committee on Assessing Genetic Risks recommended this position, cited in Andrews [4]. See also: American Society of Human Genetics and American College of Medical Genetics [5]. In the UK, see: Clarke [6]; The Advisory Committee on Genetic Testing [7]. See also: Borry et al. [8].

  4. Codori et al. [9]. In the long term the results are different. See: Codori et al. [10].

  5. Rhodes [2], supra n. 4.

  6. See Rhodes [2], supra n. 4. See also: McConkie-Rosel and Spiridigliozzi [11].

  7. E.g. Codori [10], supra n. 6; Duncan et al. [12]; Rhodes [2], supra n. 4, at p. 614.

  8. Robertson & Savulescu [13], supra n. 10, at pp. 39–40.

  9. Rhodes [2], supra n. 4.

  10. See Clarke & Gaff [1], supra n. 1.

  11. For the position in the US: The National Human Genome Research Institute, Policy and Legislation Database, www.genome.gov/PolicyEthics/LegDatabase/pubsearch.cfm (accessed 29/1/2009).

  12. See the Advisory Committee on Genetic Testing [7], supra n. 5.

  13. E.g. United Nations, The Convention on the Rights of the Child (1990). The 1990 convention was signed and ratified by Israel and the UK. The United States signed this convention but did not ratify it.

  14. Ibid, at section 12 (1).

  15. See section 3 of the 1990 convention.

  16. In English law: the Children Act 1989; in Israel: the Legal Capacity and Guardianship Act 1962.

  17. See, e.g. Re C (A child) (HIV Testing) [2000] Fam 48. In Israel: Case no 5587/97 A-G v Icar Ben (A minor), PD 51 (4) 830 (SC).

  18. See, e.g. The NHS Trust v A [2007] EWHC 1696 (Fam).

  19. For recent accounts, see: Fortin [23]; Elliston [24].

  20. Ibid. See Lindemann-Nelson & Lindemann-Nelson [25].

  21. In English law: Re Y (mental patient: bone marrow donation) [1997] Fam 110, [1996] 2 FLR 787; in Israeli law: Case no. 349/90 A-G v Shani Cohen, Takdin-District 90 (2) 482.

  22. See McConkie-Rosell & Spiridigliozzi [11], supra n. 8, and Rhodes, supra n. 4.

  23. Ibid. Rhodes [2].

  24. See Sevick [14], supra n. 10; and also: Friedman-Ross [3], supra n. 4.

  25. See Robertson & Savulescu [13], supra n. 10.

  26. This view stands in contrast to the paucity of evidence about the harms caused by communication of risk to the children. See: Duncan [28]; Duncan and Delatycki [29].

  27. See, McConkie-Rosell & Spiridigliozzi [11], supra n. 8; also Malpas [15], supra n. 10.

  28. For two opposite views regarding confidentiality and disclosure to family members in genetics, see: Laurie [30]; Gilbar [31].

  29. The legal position in Scotland in similar. See: The Age of Legal Capacity (Scotland) Act 1991.

  30. The Family Law Reform Act 1969.

  31. The Children Act 1989. Section 1 holds that the child's welfare is the paramount consideration.

  32. Re W [1992] 4 All ER 627.

  33. See Re Y, supra n. 21.

  34. Gillick v West Norfolk and Wisbech Area Health Authority [1985] 3 All ER 402 (hereafter: Gillick).

  35. E.g. Re A (A Minor) [1991] 4 All ER 177 (CA), Re W, supra n. 32.

  36. See Jackson [34], ibid.

  37. Re C (Welfare of Child: Immunisation) [2003] EWCA Civ 1148, [2003] 2 FLR 1095 (CA); Re C (A Child) (HIV Test) [2000] Fam 48.

  38. E.g. Re T (A Minor) (Wardship: Medical Treatment) [1997] 1 All ER 906 (CA).

  39. Re L (Medical Treatment: Gillick Competency) [1998] 2 FLR 810; Re E (A Minor) (Wardship: Medical Treatment) [1993] 1 FLR 386.

  40. Re W (A Minor) (Medical Treatment: Court's Jurisdiction) [1993] Fam 64.

  41. See e.g. supra n. 37.

  42. See second scenario in Clarke & Gaff [1], supra n. 1.

  43. Northamptonshire HA v Official Solicitor and Governors of St Andrew's Hospital [1994] 1 FLR 162.

  44. Re C (Detention: Medical Treatment) [1997] 2 FLR 180.

  45. See, Herring [37], supra n. 54, at p. 169.

  46. Re C (Welfare of Child: Immunisation) [2003] EWCA Civ 1148.

  47. In Re S (Adult Patient: Sterilisation) [2001] Fam 15; Jackson [34], supra n. 48, at p. 229.

  48. In genetics see: The Nuffield Council on Bioethics, Genetic Screening: Ethical Issues (1993), 43.

  49. For a detailed account, see Laurie [30], supra n. 38, Gilbar [31], supra n. 38.

  50. This is evident in R (Axon) v Secretary of State for Health [2006] Q.B. 539.

  51. See Jackson [34], supra n. 48, at p. 333.

  52. This was the essence of the decision in Gillick. Children at the age of 16 and 17 have the same right to confidentiality as adults. See Torbay Borough Council v NGN [2003] EWHC 2927 (Fam).

  53. Ibid. Mason and Laurie summarises this position as “granting a right to confidentiality to the mature minor when the exercise of that right was in her best interests.” See Mason and Laurie [42].

  54. See Laurie [31], supra n. 38.

  55. See R (Axon), supra n. 50.

  56. Loughrey [40], supra n. 66.

  57. Gilbar [31], supra n. 38, Ch. 6; also: Clarke et al. [44].

  58. The Legal Capacity and Guardianship Act 1962, section 68.

  59. The actual wording includes not only parents but those who have parental responsibility for the child.

  60. See below for an analysis of section 27.

  61. See supra n. 3.

  62. Case number 2098/91 John Doe v Vardi Jack, PD 45 (3) 417 (Supreme Court).

  63. The only treatment which could save the children was a bone marrow transplantation. The proposed treatment carried significant risks and if not successful could have hastened the children's deaths. Since the children were not in immediate danger, the judge did not allow the procedure, relying on the views of the mother and the children against that of the father. Case no 58623/01 (Tel-Aviv magistrate court—family division) K.T. v K.A., judgement given on 15/6/2004 (Hebrew).

  64. This was stated by the legal advisor to the Israeli Parliament’s Science Committee, the body that drafted the Genetic Information Act 2000. See: Agmon [46].

  65. Annas J., Glantz L., Roche P., The Genetic Privacy Act and Commentary, http://www.ornl.gov/sci/techresources/Human_Genome/resource/privacy/privacy1.html (last accessed 29/1/2009).

  66. Emphasis mine (R.G.).

  67. Notably, the term "benefit" receives its widest interpretation in subsection (4), which states that parents may provide consent to testing their child for the purpose of research. This reflects a communitarian perspective in that the promotion of the common good of the community will advance the interests of the child. Arguably, the research in which the child participates promotes the child's interests in some way.

  68. See GPA, supra n. 83.

  69. Currently, non-profit charities encourage people to voluntarily donate bone marrow samples. However, some suggest that Parliament should regulate this area and make bone marrow donation compulsory. The debate underscores the communitarian ideology of Israeli society.

  70. The legal position in Israel regarding termination of pregnancy is similar to the one in England. A local hospital committee of two doctors and a social worker has the authority to approve a woman’s request to abort when the future child may be born with a physical or mental disease or disability. After week 24 of the pregnancy the woman must apply to a regional committee which also includes a geneticist and a neonatalist as advisors. This provision is open to wide interpretation and the practice is rather permissive. Until recently, the regional and local committees allowed termination of pregnancy when the suspected medical condition compromises the child’s quality of life, for example due to dwarfism or absence of a limb. See: Hashiloni-Dolev [47]; Gross and Israel [48]. However, the discretion of the regional committees was limited in December 2007 by a Ministry of Health circular prohibiting termination past the end of week 27 if the future child has “moderate handicap” which will compromise his/her ability to integrate in society and requires some help but not for his/her whole life. Since it is doubtful whether this circular has the legal authority to limit women’s rights, it is too early to tell what effect this limitation will have in practice.

  71. The Act does not state that the child should be the first family member to be tested before his/her parents or other blood relatives. Therefore, section 27 authorises involving the child in a linkage analysis when a diagnosis of his/her relative is undertaken.

  72. Borry [22], at pp. 290–291; and also: Duncan & Delatycki [29], supra n. 36.

  73. However, see: Codori [10], supra n. 6.

  74. I thank Dr Stavit Shalev and Ms Shiri Shkedi for clarifying the practice in this area in Israel.

  75. Remennick [53].

  76. See Weiss [52], supra n. 95. Interestingly, support for prenatal testing also comes from leaders of disability rights organizations in Israel. See: Raz [56].

  77. Notably, although beyond the scope of this paper, the high incidence of the inherited neurological disease Tay Sach’s in Ashkenazi Jews in Israel (1:30) has influenced policy. The Ministry of Health recommends that one genetic parent undergo testing, with the costs of testing fully covered by the state. Indeed, this policy has led to an almost complete avoidance of the disease in Israel. See: Department of Health, Genetic testing before or during pregnancy (24/9/2008). http://www.health.gov.il/pages/default.asp?pageid=863&parentid=854&catid=116&maincat=35.

  78. The population in the UK is ten times the population of Israel, yet the number of genetic clinics is almost the same: 23 centres across the UK and 18 in Israel. See: Genetic Interest Group, Directory of genetic centres and services (16/9/2009), http://www.gig.org.uk/services.htm#NO (last accessed 16/6/2009); Ministry of Health, Public Health Services, Department of Laboratories, (13/3/2005), http://www.health.gov.il/units/mahabadot/doc/MolGenLabList_2005a.pdf (last accessed 12/6/2009).

  79. Genetic counsellors who work in hospitals in rural areas provide genetic counselling in the community. For example, these services are provided by genetic clinics in the peripheral northern and southern parts of Israel.

  80. See Remennick [53], supra n. 95, at pp. 26–27. Notably, however, direct-to-consumer genetic testing in Israel is rare, or at least not reported by the media or by the professional literature. This testing area is not regulated, though advisory bodies recommend legislation. See: The Gertner Institute for epidemiology and health policy research [57].

  81. See Hashiloni-Dolev [47], supra n. 89. This is due to the interpretation of the Israeli law on abortion. See: Shapira [58].

  82. If dignity means treating the individual child as an end in his/herself and not as a means to other people’s ends.

  83. Case no 26/82 A-G v Prof. Tsividali, PM 43 (1) 255 (District Court-Jerusalem); Case no 349/90 A-G v Shani Cohen, Takdin-District 90 (2) 482 (District Court-Jerusalem). For a similar case in English law, see: Re Y (Mental Incapacity: Bone Marrow Transplant) [1997] Fam 110. This article does not address the issue of saviour siblings, where a future child is conceived to help his/her existing sibling recover from an illness.

  84. For a detailed account see: Gilbar [60].

  85. This is stated in section 19 of the Israeli Patient’s Rights Act 1996.

  86. Re R (A Minor) [1991] 4All ER 177; Re W [1992] 4 All ER 627; Re E (A Minor) (1990) 9 BMLR 1; Re M (Child: Refusal of Medical Treatment) [1999] 2 FLR 1097.

  87. See Brazier & Cave [35], supra n. 49, at pp. 405–406; Mason & Laurie [42], supra n. 70, at pp. 372–373; Herring [37], supra n. 53, at pp. 185–187. The division between basic and autonomy interests was suggested by Eekellar [61].

  88. Re A (Conjoined Twins: Medical Treatment) [2001] 1 FLR 1; Herring [37], supra n. 54, at p. 187.

  89. Re T (A Minor) (Wardship: Medical Treatment) [1997] 2 FCR 363.

  90. Remennick [53], supra n. 95, Hashiloni-Dolev [47], supra n. 89; Weiss [55], supra n. 97.

  91. Scully et al. [62], where sex selection for medical purposes is also discussed; Middleton et al. [63]; Hewison et al. [64].

  92. Hashiloni-Dolev and Shkedi [67], where they discuss family ethics in the context of genetics generally.

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Acknowledgments

I would like to thank Prof. Anneke Lucassen for her insightful comments on the Israeli legal position, as well as the two anonymous referees. I would also like to thank Dr. Stavit Shalev, the lead consultant of the Institute of Genetics, Emek Medical Centre, Afula, Israel, and Ms. Shiri Shkedi, genetic counsellor, Institute of Gene Therapy, Hadassah Medical Centre, Jerusalem, Israel, for their valuable contribution to this article.

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    Roy Gilbar

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Gilbar, R. Genetic testing of children for familial cancers: a comparative legal perspective on consent, communication of information and confidentiality. Familial Cancer 9, 75–87 (2010). https://doi.org/10.1007/s10689-009-9268-2

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