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

AI Article Synopsis

  • - The year 2023 celebrated 60 years of newborn screening (NBS) in the U.S., aiming to improve health outcomes through early diagnosis and intervention for all newborns, regardless of their background.
  • - Advances in technology and genomics are increasing the number of conditions screened, presenting an opportunity to enhance pediatric health and uphold children's rights, especially as we approach significant anniversaries of children's rights declarations.
  • - The manuscript discusses the evolution of children's rights to healthcare, highlights access and equity challenges in newborn screening, and argues for incorporating genomics in NBS to better protect the rights of every child.

Article Abstract

The year 2023 marked the 60 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 100 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.

Download full-text PDF

Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC11364257PMC
http://dx.doi.org/10.18103/mra.v12i3.5167DOI Listing

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