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  1. The Use of Newborn Screening Dried Blood Spots for Research: The Parental Perspective.Li-Ming Gong, Wen-Jun Tu, Jian He, Xiao-Dong Shi, Xin-Yu Wang & Ying Li - 2012 - Journal of Bioethical Inquiry 9 (2):189-193.
    ObjectiveTo investigate the attitudes of Chinese parents regarding the storage of dried blood spots collected for newborn screening (NBS) and their use in research.MethodsWe conducted a hospital-based survey of parents and examined parental attitudes regarding (a) allowing NBS sample storage, (b) permitting use of children’s NBS samples for research with parental permission, and (c) permitting use of children’s NBS samples for research without parental permission.ResultsThe response rate was 52 percent. Of parents surveyed, 68 percent would permit their infant’s NBS sample (...)
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  • Informed Consent, Body Property, and Self-Sovereignty.Radhika Rao - 2016 - Journal of Law, Medicine and Ethics 44 (3):437-444.
    Recent cases involving biosamples taken from indigenous tribes and newborn babies reveal the emptiness of informed consent. This venerable doctrine often functions as a charade, a collective fiction which thinly masks the uncomfortable fact that the subjects of human research are not actually afforded full information regarding the types of research that may be contemplated, nor do they provide meaningful consent. But if informed consent fails to provide adequate protection to the donors of biological materials, why not turn to principles (...)
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  • What can data trusts for health research learn from participatory governance in biobanks?Richard Milne, Annie Sorbie & Mary Dixon-Woods - forthcoming - Journal of Medical Ethics.
    New models of data governance for health data are a focus of growing interest in an era of challenge to the social licence. In this article, we reflect on what the data trust model, which is founded on principles of participatory governance, can learn from experiences of involving and engagement of members of the public and participants in the governance of large-scale biobanks. We distinguish between upstream and ongoing governance models, showing how they require careful design and operation if they (...)
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