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The Rights of Children in Biomedicine: Challenges Posed by Scientific Advances and Uncertainties

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The Rights of Children in Biomedicine: Challenges Posed by Scientific Advances and Uncertainties The Rights of Children in Biomedicine: Challenges posed by scientific advances and uncertainties Kavot Zillén, Jameson Garland, & Santa Slokenberga Table of Contents About the Authors ...................................................................................................................... v Executive summary .................................................................................................................... 1 Resumé ....................................................................................................................................... 2 1. Introduction ............................................................................................................................ 4 1.1 The aims of the report ...................................................................................................... 4 1.2 Scientific challenges in biomedicine, pediatric care, and law .......................................... 5 1.2.1 Identifying the vulnerabilities and diversity of children as a class ........................... 5 1.2.2 Conceptualizing risk in relation to scientific advances, uncertainties, and rights ..... 6 1.2.3 Locating uncertainty and risk in biomedicine ........................................................... 7 1.3 The parameters and methodology of the report ............................................................... 8 1.4 The structure and disposition of the report ..................................................................... 10 2. Child development and its relation to medical science ........................................................ 11 2.1 Introduction .................................................................................................................... 11 2.2 Scientific Background .................................................................................................... 11 2.2.1 General developmental principles ........................................................................... 11 2.2.2 Developmental periods and their relationship to biomedical risk ........................... 13 2.3 Analysis .......................................................................................................................... 15 2.3.1 The utility of regulation and rights in responding to risk and uncertainty .............. 15 2.3.2 Scientific uncertainty and the right to the highest attainable standard of health ..... 17 2.3.3 Scientific uncertainty and the right to consent or to be heard ................................. 18 2.4 Summary of the rights at stake ....................................................................................... 20 3. Interventions at the earliest stage of human development that affect the future child ......... 21 3.1 Introduction .................................................................................................................... 21 3.2 Assisted reproductive technology (ART) ....................................................................... 21 3.3 Corrective procedure in utero ......................................................................................... 26 3.4 Summary of the rights at stake ....................................................................................... 30 4 Genetics: analysis, therapy and technology .......................................................................... 31 4.1 Introduction .................................................................................................................... 31 4.2 Health-related direct-to-consumer genetic testing ......................................................... 32 4.3 Next generation prenatal testing ..................................................................................... 34 4.4 Genomic sequencing of newborns ................................................................................. 35 4.5 Genome editing .............................................................................................................. 36 4.6 Summary of the rights at stake ....................................................................................... 38 5. Clinical practices for children classified as minorities based on their gender, sexuality, and physical sex characteristics ...................................................................................................... 39 5.1 Introduction .................................................................................................................... 39 5.2 Children with differences in sex development and intersex conditions ......................... 40 5.3 Clinical efforts to “change” sexual orientation and gender identity .............................. 45 5.4 Access to care for lesbian, gay, bisexual and transgender youth ................................... 46 5.5 Summary of the rights at stake ....................................................................................... 50 6. Children diagnosed with serious physiological and psychological health needs ................. 51 6.1 Introduction .................................................................................................................... 51 6.2 Children diagnosed with significant physical health needs............................................ 51 6.3 Children diagnosed with psychiatric disorders or severe mental health needs .............. 56 6.4 Summary of the rights at stake ....................................................................................... 61 7. Transplantation ..................................................................................................................... 62 7.1 Introduction .................................................................................................................... 62 7.2 Children as transplantation recipients ............................................................................ 62 7.3 Children as potential donors at death ............................................................................. 64 7.4 Children as living donors ............................................................................................... 65 7.5 Summary of the rights at stake ....................................................................................... 67 8. End of life care ..................................................................................................................... 68 8.1 Introduction .................................................................................................................... 68 8.2 Withdrawal of active treatment ...................................................................................... 69 8.3 Palliative care at the end of life ...................................................................................... 70 8.4 Assisted dying practices ................................................................................................. 72 8.5 Summary of the rights at stake ....................................................................................... 73 9. Summary and Conclusions ................................................................................................... 74 9.1 Overarching concerns for children’s rights in biomedicine ........................................... 74 9.2 Rights identified ............................................................................................................. 75 9.2.1 The highest attainable standard of health ................................................................ 75 9.2.2 Physical and psychological integrity ....................................................................... 76 9.2.3 Consent and due consideration for the child’s views .............................................. 77 9.2.4 Identity and private life ........................................................................................... 77 9.2.5 Protection from discrimination ................................................................................ 78 9.2.6 Liberty and protection from inhumane and degrading treatment ............................ 79 9.2.7 The right to life ........................................................................................................ 79 9.3 The future of children’s rights in an evolving biomedical landscape ............................ 80 About the Authors Kavot Zillén holds a doctoral degree in Medical Law from Uppsala University. Her dissertation focuses on human rights in health care, specifically: the right to health, freedom of religion and the prohibition on discrimination. Her position at the Faculty of Law at Uppsala University involves research and teaching in the field of medical law, social rights law, administrative law, and human rights law. She is also a Course Director for a Medical Law course at the Faculty of Law and responsible for a course on freedom of religion in secular and religious cultures at the Faculty of Theology in Uppsala. Since 2014 she has been teaching a summer course, together with Santa Slokenberga, at the Summer Institute in Bioethics at Yale University on comparative human rights and health. Jameson Garland holds a doctoral degree in Medical Law from Uppsala University, as well as a Juris Doctor in Law from Harvard University, where he was also a Fellow at the Center for the History of Medicine. His primary scholarly work in medical law currently focuses on science, evidence, and its relationship to pediatric medicine. His dissertation focused on the
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