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From Law to Practice
Ton Liefaard, Aart Hendriks & Daniella Zlotnik
—Leiden University—
Commissioned by the Committee on Bioethics (DH-BIO) of the Council of Europe
This report, commissioned by the Council of Europe’s Committee on Bioethics (DH-BIO),has a two-fold aim; first, to assess whether and to what extent the existing body of international and European law provides adequate protection to the rights of children in relation to biomedicine and, second, to recommend actions (‘roadmap’) the Council of Europe could undertake to strengthen the rights of children in that regard. It relies on a previous report commissioned by the Committee on Bioethics (Uppsala University, ‘The Rights of Children in Biomedicine: Challenges posed by Scientific Advances and Uncertainties’, 2017)
From Law to Practice: Towards a Roadmap to strengthen Children’s Rights in the Era of Biomedicine
Chapter 3:Biomedical standards
3.1 International standards
p.21 International standards on preconceptional and prenatal interventions mostly stress the importance of access to safe prenatal health care.105 Safe prenatal health care is also seen as a means to improve the health of mothers and children.106 Standards remain silent, however, on the precise meaning of prenatal health care, whether this extents to preconceptional interventions and how to assess whether these techniques are consistent with human dignity and the rights of the (future) child. In general, international standards urge for restraint and more research in case the implications of preconceptional and prenatal interventions, including their validity and ethical impacts, are not fully clear yet.107
p.22 When it comes to gender modification techniques international standards are still relatively silent. The CRC Committee recently urged States not to subject intersex individuals to unnecessary medical or surgical treatment during infancy or childhood, and to provide families with intersex children adequate counselling and support. The UN Special Rapporteur on Torture also recommended States to amend laws that fail to protect children from medically unnecessary gender-normalizing procedures.115 In addition, while the CRC Committee has emphasised the right of children, particularly adolescents, to respect for their physical and psychological integrity, gender identity and emerging autonomy,116 yet there are no sufficient international legal standards or guidance in relation to transgender children’s access to gender modification techniques.
Chapter 4: Biomedical challenges and children’s rights
4.2 Selected areas in biomedicine
4.2.5 Gender modification techniques
p.34 Gender modification techniques (including decisions relating to conducting or refraining from treatment and surgical intervention), particularly relating to transgender and intersex children, can have irreversible and life-long consequences for the child.202 This raises legal constraints between the wishes of parents, the assessment of the medical necessity by medical professionals and the rights, views and interests of children.203 These issues, however, are not adequately addressed in the current framework.
- Lack of specific guidance: in relation to transgender and intersex children, there is no specific guidance on the issues these children are confronted with and on gender modification techniques in relation to children. Considering intersex children, the CHRB holds that medical interventions for persons not able to consent may only be carried out for their ‘direct benefit’.204 Yet it is highly disputed whether gender modification techniques can be regarded as beneficial in the absence of a medical necessity. As long as clinicians themselves do not agree on the advantages and disadvantages of these interventions, particularly if performed at a young age, the concept ‘medical necessity’ does not provide much certainty either. The lack of concrete guidance on applying the CHRB in the context of intersex children leaves the door open for medically unnecessary and irreversible gender modification procedures, with grave consequences for children’s rights and well-being, while others might argue that unnecessarily delaying such interventions is neither in the best interests of the child. Specifically In relation to transgender children, there is no specific guidance on when, and under what conditions, children can have access to hormonal treatment to suppress puberty and avoid developing permanent and unwanted characteristics of their biological sex, or even surgical interventions, 205 and it is unclear if and to what extent the CHRB can be applied in this context. Therefore, more guidance is highly needed, as well as additional standard-setting in which the position of both transgender and intersex children is explicitly recognised. It is also recommended to explore if the drafting of additional and legally binding standards in this regard is feasible or that further guidance should be provided through recommendations and/or guidelines to Council of Europe Member States. The position of intersex and transgender children should also be explored as part of the recommended legal mapping across national contexts in the Council of Europe Member States.
- Protection: certain gender modification techniques on intersex and transgender children (e.g. sterilization, irreversible, involuntary and medically unnecessary procedures, etc.) can amount to a violation of a child’s right to protection and physical integrity. Gender is also recognised as a fundamental element in human identity, and such procedures can amount to a violation of the child’s right to preserve and maintain his or her identity.206 The responsibility of States to protect children also extends to health-related services, institutions and professionals working with and for children.207 This requires guidance on how to implement and ensure the right of the child to protection in the context of gender modification techniques.
- Participation: gender modification techniques on intersex children are generally conducted before the child is able to provide consent. Authorization is provided by the parents who, even being well-intentioned, are often confused and under-informed. In relation to transgender children, it is unclear how their right to be heard is implemented in practice, and if it receives adequate weight by parents and medical professionals. States should therefore be encouraged to strictly regulate gender modification techniques applied on children (e.g. ethical committees), guided by the rights of the child and the general principles of the CRC. Again, the Council of Europe could facilitate this process by exploring the feasibility of the drafting of additional and legally binding standards in this regard and/or providing further guidance through recommendations and/or guidelines to Council of Europe Member States.
Annex I – List of specific recommendations (chapter 4) Biomedical research
p.52 Preconceptional and prenatal interventions
- The Council of Europe is recommended to explore the issue of preconceptional and prenatal interventions, including the appropriate protection of embryos and fetuses in relation to medical interventions, and balancing the (potential) conflicts between the rights and interests of (future) parents and their (future) children and their rights. It is recommended to explore if the drafting of additional and legally binding standards in this regard is feasible or that further guidance should be provided through recommendations and/or guidelines to Council of Europe Member States.
- The Council of Europe is recommended to establish guidelines for States and identify best practices in relation to surrogacy and gamete donation that take into account the right of the child to identity and to receive reliable information on his or her origin and birth.
p.52 Gender modification techniques
- The Council of Europe is recommended to provide guidance, as well as additional standardsetting, for States in relation to gender modification techniques concerning intersex and transgender children. In relation to intersex children, guidance and standards should tackle, on the one hand, the medically unnecessary and irreversible gender modification procedures and their potential grave consequences for children’s rights and well-being, and on the other, to recognise that delaying certain interventions can also negatively impact the best interests of children. For transgender children, guidance and standards are required to determine when, and under what conditions, children can have access to hormonal treatment and surgical interventions, and what role does the CHRB play in that regard. It is recommended to explore if the drafting of additional and legally binding standards in this regard is feasible or that further guidance should be provided through recommendations and/or guidelines to Council of Europe Member States. The position of intersex and transgender children should also be explored as part of the abovementioned recommended legal mapping across national contexts in the Council of Europe Member States.
- The Council of Europe is recommended to explore the practices relating to gender modification techniques on intersex or transgender children (e.g. sterilization, irreversible, involuntary and medically unnecessary procedures, etc.) and determine their implications in relation to the child’s right to protection and to identity. In that regard, the Council of Europe is recommended to provide further guidance to States on how to implement and ensure the rights of intersex and transgender children to protection and identity in the context of gender modification techniques.
- The Council of Europe is recommended to encourage States to strictly regulate gender modification techniques applied on children, and ensure that such regulative bodies and/or standards are guided by the rights of the child and the general principles of the CRC, and in particular the right of the child to be heard and participate in decision-making. Again, the Council of Europe could facilitate this process by exploring the feasibility of drafting of additional and legally binding standards in this regard and/or providing further guidance through recommendations and/or guidelines to Council of Europe Member States.
Footnotes
105 See for example Article 24 para 2 (d) CRC imposing a duty on States to ensure appropriate pre-natal and post-natal health care for mothers.
106 UN (2015), Global Strategy for Women’s, Children’s and Adolescents’ Health (2016-2030)
107 See for example the ISUOG consensus statement on the impact of non-invasive prenatal testing (NIPT) on prenatal ultrasound practice, published in Ultrasound Obstet Gynecol 2014; 44: pp. 122–123.
115 See in Garland, J. (2016), On Science, Law, and Medicine. The case of gender-“normalizing” interventions on children who are diagnosed as different in sex development, Lund: Lund University.
116 CRC Committee, General Comment No. 20 (2016) on the implementation of the rights of the child during adolescence, 6 December 2016, CRC/C/GC/20; See also WPATH (2011), Standards of Care: for the Health of Transsexual, Transgender, and Gender Nonconforming People, p. 10-21, 7th edition (hereinafter: ‘WPATH (2011)’).
202 See European Union Agency for Fundamental Rights (FRA), The Fundamental Rights Situation of Intersex People, 04/2015, p. 5 (hereinafter: ‘’FRA (2015) on Intersex People’’.
203 Newbould, M. (2017), ‘When Parents Choose Gender: Intersex, Children and the Law’, Medical Law Review 24(4), p. 496; FRA (2015) on Intersex People, supra note 202, p. 7.
204 Article 6 para. 1 CHRB
205 Price-Minter, S. (2012), ‘Supporting Transgender Children: New Legal, Social and Medical Approaches’, Journal of Homosexuality 59, pp. 428-429; See also WPATH (2011), supra note 116, p. 18-21.
206 See Article 7 CRC.
207 CRC Committee, General Comment No. 8 (2006). The right of the child to protection from corporal punishment and other cruel or degrading forms of punishment (arts. 19; 28, para. 2; and 37, inter alia), 2 March 2007, CRC/C/GC/8; CRC Committee, General comment No. 13 (2011). The right of the child to freedom from all forms of violence, para. 52, 18 April 2011, CRC/C/GC/13; Recommendation CM/Rec(2009)10 of the Committee of Ministers. Council of Europe Policy guidelines on integrated national strategies for the protection of children from violence (2009).
From Law to Practice: Towards a Roadmap to Strengthen Children’s Rights in the Era of Biomedicine
Leiden, 30 June 2017
Commissioned by the Committee on Bioethics (DH-BIO) of the Council of Europe
The Authors
- Prof. Dr. Ton Liefaard is professor of children’s rights and holds the UNICEF Chair in Children’s Rights at Leiden Law School, Leiden University, the Netherlands.
- Prof. Dr. Aart Hendriks is professor in health law at Leiden Law School, Leiden University, the Netherlands.
- Daniella Zlotnik, LL.M. is a researcher and lecturer on child law at Leiden Law School, Leiden University, the Netherlands.