Expanded newborn screening and genomic sequencing in Latin America and the resulting social justice and ethical considerations
Author
dc.contributor.author
Cabello Andrade, Juan Francisco
Author
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Novoa, Fernando
Author
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Huff, Hanalise V.
Author
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Colombo Campbell, Marta Paulina
Admission date
dc.date.accessioned
2021-12-10T15:32:24Z
Available date
dc.date.available
2021-12-10T15:32:24Z
Publication date
dc.date.issued
2021
Cita de ítem
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Int. J. Neonatal Screen. 2021, 7, 6.
es_ES
Identifier
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10.3390/ijns7010006
Identifier
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https://repositorio.uchile.cl/handle/2250/183150
Abstract
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Newborn screening (NBS) has widely been utilized in developed countries as a costeffective
public health strategy that reduces morbidity and mortality. Developing countries, however,
are new to the NBS scene and have their own unique challenges, both in instituting the program as
well as effectively acting on the results. NBS offers numerous ethical issues on a global scale, however,
here we argue that there are unique ethical issues surrounding the development and expansion of
newborn screening in Latin America given its highly heterogenous population. Once a NBS program
is effectively instated, ethical considerations continue when pursuing expansion of screening to
include further conditions. While Latin America grapples with the ethics of expanded newborn
screening (ENBS), some developed countries discuss utility of genomic sequencing technologies
in the newborn population. When the ability to detect further pathology is expanded, one must
know what to do with this information. As rare diseases are identified either on ENBS or via genome
sequencing, access to treatments for these rare diseases can be a real challenge. If we consider
newborn screening as a global initiative, then we need more than a deontology approach to analyze
these challenges; we need an approach that considers the unique characteristics of each territory and
tremendous heterogeneity that exists prior to the implementation of these programs. As genomic
technology advances further in the developed world, while some developing countries still lack even
basic newborn screening, there is a further widening of the gap in global health disparities. The
question is posed as to who has responsibility for these newborns’ lives on an international level.
Without an approach towards newborn screening that accounts for the diverse global population, we
believe optimal outcomes for newborns and families across the world will not be achieved.
es_ES
Lenguage
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en
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Publisher
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MDPI
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Type of license
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Attribution-NonCommercial-NoDerivs 3.0 United States