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  1. Parental awareness and perspectives on newborn screening in China: a questionnaire-based study.Xiaoshan Yin, Peiyao Wang, Ziyan Cen, Zinan Yu, Qimin He, Benqing Wu & Xinwen Huang - 2024 - BMC Medical Ethics 25 (1):1-8.
    Low parental awareness and knowledge about newborn screening have been identified as a public issue. This study explored Chinese parents’ self-evaluation of awareness, knowledge, and methods of receiving information about newborn screening. Using convenience sampling, we included 614 respondents who were expectant parents or parents of children aged 0-3 years. Our self-made questionnaire comprised four sections: sociodemographic characteristics, self-evaluation of awareness, detailed knowledge about newborn screening, and practical and expected methods of receiving newborn screening information. We found that 72.9% of (...)
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  • Storing paediatric genomic data for sequential interrogation across the lifespan.Christopher Gyngell, Fiona Lynch, Danya Vears, Hilary Bowman-Smart, Julian Savulescu & John Christodoulou - forthcoming - Journal of Medical Ethics.
    Genomic sequencing (GS) is increasingly used in paediatric medicine to aid in screening, research and treatment. Some health systems are trialling GS as a first-line test in newborn screening programmes. Questions about what to do with genomic data after it has been generated are becoming more pertinent. While other research has outlined the ethical reasons for storing deidentified genomic data to be used in research, the ethical case for storing data for future clinical use has not been explicated. In this (...)
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