Balancing the rights of the pre-symptomatic child to be found with the risk of harm to others from the screening process
Author:
Funder
Wellcome Trust
Publisher
Springer Science and Business Media LLC
Link
https://www.nature.com/articles/s41431-024-01689-6.pdf
Reference6 articles.
1. Knoppers BM, Bonilha AE, Laberge AM, Ahmed A, Newson AJ. Genomic sequencing in newborn screening: balancing consent with the right of the asymptomatic at-risk child to be found. Eur J Hum Genet. 2024. https://doi.org/10.1038/s41431-024-01677-w.
2. Ballard LM, Horton RH, Dheensa S, Fenwick A, Lucassen AM. Exploring broad consent in the context of the 100,000 Genomes Project: A mixed methods study. Eur J Hum Genet. 2020;28:732–41.
3. White AL, Boardman F, McNiven A, Locock L, Hinton L. Absorbing it all: A meta-ethnography of parents’ unfolding experiences of newborn screening. Soc Sci Med. 2021;287:11436.
4. Horton R, Wright CF, Firth HV, Turnbull C, Lachmann R, Houlston RS, et al. Challenges of using whole genome sequencing in population newborn screening. BMJ. 2024;384:e077060. https://doi.org/10.1136/bmj-2023-077060.
5. Baple EL, Scott RH, Banka S, Buchanan J, Fish L, Wynn S, et al. Exploring the benefits, harms and costs of genomic newborn screening for rare diseases. Nat Med. 2024;30:1823–5. https://doi.org/10.1038/s41591-024-03055-x.
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