An Ethical Code for Posthumous Medical Data Donation
- PMID: 32091861
- Bookshelf ID: NBK554071
- DOI: 10.1007/978-3-030-04363-6_12
An Ethical Code for Posthumous Medical Data Donation
Excerpt
This chapter follows the argument that personal medical data should be made available for scientific research by enabling and encouraging individuals to donate their medical records after death, provided that this can be done safely and ethically. While medical donation schemes with dedicated regulatory and ethical frameworks for blood, organ or tissue donations are already in place, no such ethical guidance currently exists with regard to personal medical data. In addressing this gap, this chapter presents the first ethical code for posthumous medical data donation (PMDD). It is based on five foundational principles and seeks to inform and guide the implementation of an effective and ethical PMDD scheme by addressing the key risks associated with the utilisation of personal health data for the promotion of the common good.
Copyright 2019, The Author(s).
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References
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- BrainNet Europe Code of Conduct by the BNE Consortium. 2008, May. Available at http://www.brainnet-europe.org/images/content/en/media/code/code_of_cond....
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- Framework for responsible sharing of genomic and health-related data by the Global Alliance for Genomics and Health. 2014. Available at https://www.ga4gh.org/docs/ga4ghtoolkit/rsgh/Framework-Version-10Septemb....
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- Human Tissue Authority’s Code A: Guiding principles and the fundamental principle of consent, available at https://www.hta.gov.uk/sites/default/files/HTA%20%2807a-17%29%20Guiding%....
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- Overview of legal and ethical frameworks governing body donation in Europe by Riederer et al. 2016. Available at http://repository.ubn.ru.nl/bitstream/handle/2066/116823/116823.pdf?sequ....
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- UK Biobank Ethics and Governance Framework. Version 3.0, October 2007. Available at http://www.ukbiobank.ac.uk/wp-content/uploads/2011/05/EGF20082.pdf?phpMy....
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