Emerging Ethical Issues Regarding Digital Health Data. On the World Medical Association Draft Declaration on Ethical Considerations Regarding Health Databases and Biobanks

作者: Christine Aicardi , Lorenzo Del Savio , Edward S. Dove , Federica Lucivero , Niccolò Tempini

DOI: 10.3325/CMJ.2016.57.207

关键词:

摘要: Throughout many parts of the world, biomedical research ethics is based on a core body well-established norms, rules, and principles, including Declaration Helsinki, Nuremberg Code, Belmont Report, International Ethical Guidelines for Biomedical Research Involving Human Subjects (1). The overarching goal these codifications to protect people against harms arising from research, researchers experimenting them without their knowledge permission.

参考文章(12)
Anna Lydia Svalastog, Joachim Allgaier, Lucia Martinelli, Srecko Gajovic, Distortion, confusion, and impasses: could a public dialogue within Knowledge Landscapes contribute to better communication and understanding of innovative knowledge? Croatian Medical Journal. ,vol. 55, pp. 54- 60 ,(2014) , 10.3325/CMJ.2014.55.54
Jannis Kallinikos, Niccolò Tempini, Patient Data as Medical Facts: Social Media Practices as a Foundation for Medical Knowledge Creation Information Systems Research. ,vol. 25, pp. 817- 833 ,(2014) , 10.1287/ISRE.2014.0544
Kristin Solum Steinsbekk, Bjørn Kåre Myskja, Berge Solberg, Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem? European Journal of Human Genetics. ,vol. 21, pp. 897- 902 ,(2013) , 10.1038/EJHG.2012.282
Ezekiel J Emanuel, David Wendler, Christine Grady, What Makes Clinical Research Ethical JAMA. ,vol. 283, pp. 2701- 2711 ,(2000) , 10.1001/JAMA.283.20.2701
Mark Taylor., Genetic data and the law Cambridge University Press,. ,(2014)
Graeme T. Laurie, Challenging Medical—Legal Norms Routledge. pp. 253- 306 ,(2017) , 10.4324/9781315254517-10
Edward S. Dove, Graeme Laurie, Consent and anonymisation: Beware binary constructions BMJ. ,vol. 350, ,(2015) , 10.1136/BMJ.H1139