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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 (...) participants were classified as aware of newborn screening. However, only 14.2% of the participants received a passing score on the newborn screening detailed knowledge questions. Knowledge level about newborn screening was significantly associated with gender (P<.001), age (P<.05), education level (P<.05), residence (P<.05), family income (P<.05), and number of children (P<.05). The knowledge acquisition about newborn screening mainly came from hospital-related training (62.1%). Additionally, nearly half of the respondents (48.0%) expressed a preference for learning more about newborn screening through social media platforms, such as WeChat. While the majority of expectant or new parents were aware of newborn screening, only a minority had a thorough understanding of it. Various sociodemographic factors were associated with the level of parental knowledge about newborn screening. It is recommended to use hospital lectures or social media initiatives to educate parents in China. (shrink)
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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 -2025 -Journal of Medical Ethics 51 (3):205-211.
    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 (...) paper, we examine the ethical case for storing genomic data with the intention of using it as a lifetime health resource. In this model, genomic data would be stored with the intention of reanalysis at certain points through one’s life. We argue this could benefit individuals and create an important public resource. However, several ethical challenges must first be met to achieve these benefits. We explore issues related to privacy, consent, justice and equality. We conclude by arguing that health systems should be moving towards futures that allow for the sequential interrogation of genomic data throughout the lifespan. (shrink)
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