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  1. If you build it, they will come: unintended future uses of organised health data collections.Kieran C. O’Doherty, Emily Christofides, Jeffery Yen, Heidi Beate Bentzen, Wylie Burke, Nina Hallowell, Barbara A. Koenig & Donald J. Willison - 2016 - BMC Medical Ethics 17 (1):54.
    Health research increasingly relies on organized collections of health data and biological samples. There are many types of sample and data collections that are used for health research, though these are collected for many purposes, not all of which are health-related. These collections exist under different jurisdictional and regulatory arrangements and include: 1) Population biobanks, cohort studies, and genome databases 2) Clinical and public health data 3) Direct-to-consumer genetic testing 4) Social media 5) Fitness trackers, health apps, and biometric data (...)
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  • The view of Hong Kong parents on secondary use of dried blood spots in newborn screening program.L. L. Hui, E. A. S. Nelson, H. B. Deng, T. Y. Leung, C. H. Ho, J. S. C. Chong, G. P. G. Fung, J. Hui & H. S. Lam - 2022 - BMC Medical Ethics 23 (1):1-10.
    Background Residual dried blood spots (rDBS) from newborn screening programmes represent a valuable resource for medical research, from basic sciences, through clinical to public health. In Hong Kong, there is no legislation for biobanking. Parents’ view on the retention and use of residual newborn blood samples could be cultural-specific and is important to consider for biobanking of rDBS. Objective To study the views and concerns on long-term storage and secondary use of rDBS from newborn screening programmes among Hong Kong Chinese (...)
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