A Children's Rights Framework for Genomic Medicine: Newborn Screening as a Use Case.

Medical research archives Pub Date : 2024-03-01 Epub Date: 2024-03-26 DOI:10.18103/mra.v12i3.5167
Luca Brunelli, Kee Chan, James Tabery, Warren Binford, Amy Brower
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Abstract

The year 2023 marked the 60th anniversary of screening newborns in the United States for diseases that benefit from early identification and intervention. All around the world, the goal of NBS is to facilitate timely diagnosis and management to improve individual health outcomes in all newborns regardless of their place of birth, economic circumstances, ability to pay for treatment, and access to healthcare. Advances in technology to screen and treat disease have led to a rapid increase in the number of screened conditions, and innovations in genomics are expected to exponentially expand this number further. A system where all newborns are screened, coupled with rapid technological innovation, provides a unique opportunity to improve pediatric health outcomes and advance children's rights, including the unique rights of sick and disabled children. This is especially timely as we approach the 100th anniversary of the 1924 Geneva Declaration of the Rights of the Child, which includes children's right to healthcare, and the 1989 United Nations Convention on the Rights of the Child that expanded upon this aspect and affirmed each child's right to the highest attainable standard of health. In this manuscript, we provide background on the evolving recognition of the rights of children and the foundational rights to healthcare and non-discrimination, provide two examples that highlight issues to access and equity in newborn screening that may limit a child's right to healthcare and best possible outcomes, detail ways the current approach to newborn screening advances the rights of the child, and finally, propose that the incorporation of genomics into newborn screening presents a useful case study to recognize and uphold the rights of every child.

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基因组医学的儿童权利框架:以新生儿筛查为例。
2023 年是美国对新生儿进行疾病筛查的 60 周年纪念,早期识别和干预将使新生儿受益。在全世界,新生儿疾病筛查的目标是促进及时诊断和管理,以改善所有新生儿的个人健康状况,而不论其出生地、经济条件、支付治疗费用的能力和获得医疗保健的机会如何。筛查和治疗疾病技术的进步使筛查病症的数量迅速增加,而基因组学的创新有望使这一数量进一步成倍增长。一个对所有新生儿进行筛查的系统,再加上快速的技术创新,为改善儿科健康状况、促进儿童权利(包括患病和残疾儿童的独特权利)提供了一个独特的机会。在我们即将迎来 1924 年《日内瓦儿童权利宣言》(其中包括儿童的医疗保健权)和 1989 年《联合国儿童权利公约》发表 100 周年之际,这一点显得尤为及时。在本手稿中,我们将介绍儿童权利以及医疗保健和不受歧视的基本权利不断得到承认的背景,提供两个例子来强调新生儿筛查中可能会限制儿童医疗保健权利和最佳结果的获取和公平问题,详细介绍当前新生儿筛查促进儿童权利的方法,最后提出将基因组学纳入新生儿筛查是承认和维护每个儿童权利的一个有用的案例研究。
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