The Rights of Children in Biomedicine : Challenges posed by scientific advances and uncertainties

The Committee on Bioethics of the Council of Europe commissioned this study to identify potential areas of heightened concern for the rights of children that may be unfavorably affected by scientific advances and uncertainties in biomedicine. This report is the result of that study. It provides substantive illustrations of the diversity of problems generated by biomedical developments, including the expanded use of certain biomedical procedures, emerging technologies, and innovative therapies. It also addresses uncertain risks to children through the continuation of longstanding biomedical practices that lack sufficient scientific support. Because considerable legal protections have been developed for biomedical research and continue to be debated in great depth, this report focuses more broadly on biomedicine as a whole. The specific concern addressed here is not about the research process and regulation as such, but rather on how scientific advances and risk-laden practices reach children in biomedicine – whether through health care practices or in other biomedical settings. Mapping out the areas of concern for this report required not only identifying the technological advances and scientific challenges at stake but contemplating these challenges first and foremost from the perspective of the rights of children as class – formally collectively defined as persons from birth to age 18, unless they have attained majority status. Because a subsequent report will analyze the potential legal frameworks protecting children from the scientific risks and uncertainties identified here, this report identifies the challenges in protecting children relative to those rights that are commonly described in international human rights discourse, with only summary references to specific legal instruments in the report’s conclusions. The aim of the report is to demonstrate how the scientific risks and uncertainties illustrated here may affect the rights of children from birth through adolescence, in a variety of ways. Chapter 2 surveys differences in childhood development to illustrate why the lack of protection from scientific risks and uncertainty persists, in part because of limited understanding of the developmental differences and vulnerabilities of children at different phases of life. The report then expands on how many interventions may reach children at the earliest stages of their development, such as through assisted reproduction and other interventions in utero (Chapter 3) as well as in the field of genetics (Chapter 4). The report then addresses children who have been subjected to high-risk and controversial clinical practices, many of which lack sufficient scientific support regarding their safety. Among those children at risk are sexual or gender minority children (Chapter 5) and children diagnosed with serious physical and mental health needs (Chapter 6). The next chapters address two areas affecting critically ill children where considerable policy debate has taken place, but without sufficient regard to scientific advances and uncertainties, specifically in transplantation (Chapter 7) and end-of-life decisions (Chapter 8). In the final chapter, the report sets forth numerous rights of children in biomedicine that are currently at stake from scientific advances and uncertainties – not only the right to the highest attainable standard of health but rights protecting their physical and psychological integrity and their privacy and identity, as well as freedom from discrimination. The landscape of these rights is as vast and potentially complex as biomedicine. The report thus concludes that the biomedical controversies surveyed here signal a need for systemic, continuous and multidisciplinary oversight of these issues, as well as for many biomedical interventions that could not be covered here in depth. These matters cannot be left to biomedical expertise alone, but instead require vigilant oversight from human rights authorities and scholars with an understanding of these issues.Council of Europe, The Committee on Bioethics report