Ethically robust reproductive genetic carrier screening needs to measure outcomes that matter to patients
Author:
Publisher
Springer Science and Business Media LLC
Subject
Genetics (clinical),Genetics
Link
https://www.nature.com/articles/s41431-022-01109-7.pdf
Reference8 articles.
1. Richardson EJ, McEwen A, Newton-John T, Crook A, Jacobs C Incorporating Patient Perspectives in the Development of a Core Outcome Set for Reproductive Genetic Carrier Screening: A Sequential Systematic Review. Eur J Hum Genet. 2022; https://doi.org/10.1038/s41431-022-01090-1&x2019.
2. Cornel MC, Rigter T, Jansen ME, Henneman L Neonatal and carrier screening for rare diseases: how innovation challenges screening criteria worldwide. J Community Genet. 2021;12:257–265.
3. Ong R, Howting D, Rea A, Christian H, Charman P, Molster C, et al. Measuring the impact of genetic knowledge on intentions and attitudes of the community towards expanded preconception carrier screening. J Med Genet. 2018;55:744–52.
4. Boardman FK, Young PJ, Griffiths FE. Population screening for spinal muscular atrophy: A mixed methods study of the views of affected families. Am J Med Genet A. 2017;173A:421–34.
5. Dive L, Newson AJ. Ethics of reproductive genetic carrier screening: from the clinic to the population. Public Health Ethics. 2021;14:202–17.
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