The best interests of the child and the return of results in genetic research: International comparative perspectives

BMC Medical Ethics

Volumn 15, Issue 1, 2014, Pages

  Zawati, Ma'N H ^a   Parry, David ^a   Knoppers, Bartha Maria ^a  

^a MCGILL UNIVERSITY   (Canada)

Author keywords

Best interests of the child; Children's rights; Convention on the Rights of the Child; Genomic research; Paediatrics; Return of research results

Indexed keywords

CANADA; CHILD; COMPARATIVE STUDY; DECISION MAKING; ETHICS; EUROPE; GENETICS; GENOMICS; HUMAN; INTERNATIONAL COOPERATION; INTERPERSONAL COMMUNICATION; PARENT; PATIENT RIGHT; PEDIATRICS; POLICY; RESEARCH ETHICS;

CANADA; CHILD; DECISION MAKING; DISCLOSURE; ETHICS, RESEARCH; EUROPE; GENETIC RESEARCH; GENOMICS; HUMANS; INTERNATIONALITY; PARENTS; PATIENT ACCESS TO RECORDS; PEDIATRICS; POLICY;

EID: 84908005470     PISSN: None     EISSN: 14726939     Source Type: Journal    
DOI: 10.1186/1472-6939-15-72     Document Type: Article

References (69)

1. Return of individual research results and incidental findings: facing the challenges of translational science. Wolf SM, Annu Rev Genomics Hum Gene 2013 14 557 577 10.1146/annurev-genom-091212-153506
2. The emergence of an ethical duty to disclose genetic research results: international perspectives. Knoppers BM, Joly Y, Simard J, Durocher F, EJHG 2006 14 1170 1180 10.1038/sj.ejhg.5201690 16868560
3. Pediatric research "personalized"? International perspectives on the return of results. Knoppers BM, Rioux A, Zawati MH, Pers Med 2013 10 89 95 10.2217/pme.12.110
4. Best Practices for Health Research Involving Children and Adolescents. Centre of Genomics and Policy, the Maternal Infant Child and Youth Research Network, [ http://www.genomicsandpolicy.org/best-practices.html ]
5. UN General Assembly, Convention on the Rights of the Child New York: United Nations 1989
6. International normative perspectives on the return of individual research results and incidental findings in genomic biobanks. Zawati MH, Knoppers BM, Genet Med 2012 14 484 10.1038/gim.2012.13 22344229
7. UNESCO, Universal Declaration on the Human Genome and Human Rights Paris: UNESCO 1997
8. It's my body, isn't it? Children, medical treatment and human rights. Bryant D, Monash LR 2009 35 193
9. A review of children's rights literature since the adoption of the united nations convention on the rights of the child. Reynaert D, Bouverne-de-Bie M, Vandevelde S, Childhood 2009 16 518 10.1177/0907568209344270
10. Parental authority and pediatric bioethical decision making. Cherry MJ, J Med Philos 2010 35 553 10.1093/jmp/jhq043 20847034
11. UN Committee on the Rights of the Child, General Comment no. 12-The Right of the Child to be Heard Geneva: Geneva 2009
12. The Principle of the Best Interests of the Child: What It Means and What it Demands from Adults. Hammarberg T, Proceedings of the Building a Europe for and with children-Towards a Strategy for 2009-2011 conference: 30 May 2008 Warsaw
13. World Medical Association, Declaration of Ottawa on Child Health Ottawa 1998
14. Using the best interests standard to decide whether to test children for untreatable, late-onset genetic diseases. Kopelman LM, J Med Philos 2007 32 374
15. Genetic testing in asymptomatic minors: background considerations towards ESHG recommendations. Borry P, Evers-Kiebooms G, Cornel MC, Clarke A, Dierickx K, Public and Professional Policy Committee (PPPC) of the European Society of Human Genetics (ESHG), EJHG 2009 17 711 719 10.1038/ejhg.2009.25 19277061
16. UN Committee on the Rights of the Child, General Comment no. 3-HIV/AIDS and the Rights of the Child. 32nd session; 13-31 January 2003 Geneva
17. Organisation for Economic Co-Operation and Development, OECD Guidelines for Human Biobanks and Genetic Research Databases Paris 2009
18. Balancing the rights of the child and the rights of parents in the convention on the rights of the child. Quennerstedt A, J Hum Right 2009 8 162 10.1080/14754830902897270
19. The right of the child to express views and to be heard: an attempt to interpret article 12 of the UN convention on the rights of the child. Lucker-Babel MF, Int'l J Child Rts 1995 3 391
20. UN Committee on the Rights of the Child, General Comment no. 4-Adolescent health and development in the context of the Convention on the Rights of the Child. 33rd session; 19 May-6 June 2003 Geneva
21. Mabon v Mabon. EWCA Civ 2005 634
22. UN Human Rights Council, Resolution 19/37 Rights of the Child. 19th session; 23 March 2012 New York
23. Council of Europe, European Convention for the Protection of Human Rights and Fundamental Freedoms, as amended by Protocols Nos. 11 and 14 Strasbourg 1950
24. The right of children to be heard in civil proceedings and the emerging law of the European Court of Human Rights. Daly A, Int'l J Hum Rts 2011 15 441
25. Neulinger and Shuruk v. Switzerland, App no 41615-07 Grand Chamber 2010
26. Technical report: ethical and policy issues in genetic testing and screening of children. Ross LF, Saal HM, David KL, Anderson RR, American Academy of Pediatrics, American College of Medical Genetics and Genomics, Genet Med 2013 15 3 234 245 10.1038/gim.2012.176 23429433
27. Council of Europe, Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine Oviedo 1997
28. Council of Europe, Explanatory Report to the Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine 1996 [ http://conventions.coe.int/Treaty/EN/Reports/Html/164.htm ]
29. Council of Europe, Additional Protocol to the Convention on Human Rights and Biomedicine, concerning Biomedical Research Strasbourg 2005
30. Nielsen v. Denmark, App no 10929/84 1988 A/144
31. R (on the Application of Axon) v Secretary of State for Health 2006 EWHC 37 (Admin)
32. Genetic testing in asymptomatic minors: recommendations of the ESHG. European Society of Human Genetics, EJHG 2009 17 720 19277059
33. Developing a policy for paediatric biobanks: principles for good practice. Hens K, Van El CE, Borry P, Cambon-Thomsen A, Cornel MC, Forzano F, Lucassen A, Patch C, Tranebjaerg L, Vermeulen E, Salvaterra E, Tibben A, Dierickx K, PPPC of the European Society of Human Genetics, EJHG 2013 21 2 10.1038/ejhg.2012.99 22713814
34. Whole genome sequencing in health care: recommendations of the European Society of human genetics. Van El CG, Cornel MC, Borry P, Hastings RJ, Fellmann F, Hodgson SV, Howard HC, Cambon-Thomsen A, Knoppers BM, Meijers-Heijboer H, Scheffer H, Tranebjaerg L, Dondorp W, De Wert GMWR, EJHG 2013 21 580 584 23676617
35. Communication of results and disclosure of incidental findings in longitudinal paediatric research. Anastasova V, Mahalatchimy A, Rial-Sebbag E, Antó Boqué JM, Keil T, Sunyer J, Bousquet J, Cambon-Thomsen A, Pediatr Allergy Immunol 2013 24 389 10.1111/pai.12087 23692330
36. Code Civil France 2013 [ http://www.legifrance.gouv.fr/affichCode.do;jsessionid=142C3CE696165A43585C960A24C2D70D.tpdjo14v-3?idSectionTA=LEGISCTA000006089696&cidTexte=LEGITEXT000006070721&dateTexte=20141001 ]
37. Code de la santé publique France 2013 [ http://legifrance.gouv.fr/affichCode.do?cidTexte=LEGITEXT000006072665 ]
38. LOI n° 2012-300 du 5 mars 2012 relative aux recherches impliquant la personne humaine France 2012 [ http://www.legifrance.gouv.fr/affichTexte.do?cidTexte=JORFTEXT000025441587 ]
39. L'Ordre National des Médecins, Code de déontologie médicale France 2012 [ http://www.conseil-national.medecin.fr/sites/default/files/codedeont.pdf ]
40. Gillick v West Norfolk and Wisbech Area Health Authority 1985 3 All ER 402 (HL)
41. Act FLR, United Kingdom 1969
42. Children and young people toolkit. British Medical Association, [ http://bma.org.uk/practical-support-at-work/ethics/children/children-and-young-people-tool-kit ]
43. Mental Capacity Act United Kingdom 2005 [ http://www.legislation.gov.uk/ukpga/2005/9/pdfs/ukpga-20050009-en.pdf ]
44. Report on the Genetic Testing of Children. The British Society for Human Genetics, [ http://www.bsgm.org.uk/media/678741/gtoc-booklet-final-new.pdf ]
45. Re MM (Medical Treatment), Volume 1 2000 FLR 224
46. The genetic testing of children. Working Party of the Clinical Genetics Society (UK), J Med Genet 1994 31 785 10.1136/jmg.31.10.785 7837256
47. Next steps in the sequence: the implications of whole genome sequencing for health in the UK. PHG Foundation, 2011 [ http://www.phgfoundation.org/reports/10364/ ]
48. Law 14/2007 of 3 July 2007 on Biomedical Research Spain 2007 [ http://www.isciii.es/ISCIII/es/contenidos/fd-investigacion/SpanishLawonBiomedicalResearchEnglish.pdf ]
49. Medical Research Involving Human Subjects Act Netherlands 1998
50. Gedragscode verantwoord omgaan met lichaamsmateriaal ten behoeve van wetenschappelijk onderzoek (Human Tissue and Medical Research: Code of conduct for responsible use). Federation of Dutch Medical Scientific Societies, [ http://www.federa.org/sites/default/files/digital-version-first-part-code-of-conduct-in-uk-2011-12092012.pdf ]
51. Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada, Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans Ottawa: Interagency Secretariat on Research Ethics 2 2010
52. Le meilleur intérêt de l'enfant dont la garde contestée: enjeux, contexte et pratiques. Godbout E, Parent C, Saint-Jacques MC, Enfances Familles Générations 2014 20 168 188
53. Civil Code of Québec Quebec, Canada 1994 [ http://www2.publicationsduquebec.gouv.qc.ca/dynamicSearch/telecharge.php?type=2&file=/CCQ-1991/CCQ1991-A.html ]
54. Family Law Act British Columbia, Canada 2013 [ http://www.bclaws.ca/civix/document/id/complete/statreg/11025-01 ]
55. The Child and Family Services Act Manitoba, Canada 2012 [ http://web2.gov.mb.ca/laws/statutes/ccsm/c080e.php ]
56. A.C. v. Manitoba (Director of Child and Family Services) 2009 SCC 30, [2009] 2 SCR 181
57. Children, biobanks, and the scope of parental consent. Hens K, Cassiman JJ, Nys H, Dierickx K, EJHG 2011 19 735 739 10.1038/ejhg.2011.29 21386873
58. What constitutes the best interest of a child? Views of parents, children, and physicians in a pediatric oncology setting. De Vries MC, Bresters D, Kaspers GJL, Houtlosser M, Wit JM, Engberts DP, Van Leeuwen E, AJOB Primary Res 2013 4 1
59. Children, adults, best interests and rights. Archard D, Med Law Int'l 2013 13 55 74 10.1177/0968533213486543
60. Promotion of children's rights and prevention of child maltreatment. Reading R, Bissell S, Goldhagen J, Harwin J, Masson J, Moynihan S, Parton N, Santos Pais M, Thoburn J, Webb E, Lancet 2009 373 332 10.1016/S0140-6736(08)61709-2 19056117
61. Next generation sequencing: does the next generation still have a right to an open future? Bredenoord AL, De Vries MC, Van Delden JJM, Nat Rev Gen 2013 14 2
62. Perspectives of clinical genetics professionals toward genome sequencing and incidental findings: A survey study. Lemke AA, Bick D, Dimmock D, Simpson P, Veith R, Clin Genet 2013 84 230 236 10.1111/cge.12060 23163796
63. ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing. Green RC, Berg JS, Grody WW, Kalia SS, Korf BR, Martin CL, McGuire AL, Nussbaum RL, O'Daniel JM, Ormond KE, Rehm HL, Watson MS, Williams MS, Biesecker LG, Genet Med 2013 15 565 574 10.1038/gim.2013.73 23788249
64. Incidental findings in clinical genomics: a clarification. American College of Medical Genetics and Genomics, Genet Med 2013 15 664 23828017
65. Biobank Hub-International Paediatric Research Platform. Public Population Project in Genomics and Society, [ http://www.p3g.org/resources/biobank-hub ]
66. Predictive genetic testing of children and the role of the best interest standard. Ross LF, J Law Med Ethics 2013 41 899 906 10.1111/jlme.12099 24446947
67. The legal risks of returning results of genomics research. Clayton EW, McGuire AL, Genet Med 2012 14 473 477 10.1038/gim.2012.10 22323070
68. The best interests of the child in the recent case law of the European Court of Human Rights. Costa J-P, Proceedings of an Irish-British-French Symposium on Family Law: 14 May 2011 Dublin [ http://www.hcch.net/upload/wop/abduct2011info05-en.pdf ]
69. Medicines for Human Use (Clinical Trials) Regulations United Kingdom 2004 [ http://www.legislation.gov.uk/uksi/2004/1031/contents/made ]