Panel Privacy in genomics
Legal-ethical issues
Mr. Corrette Ploem
(dep. Public Health, Academic Medical Center Amsterdam)
Outline
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• Legal-ethical issues related to the introduction of next
generation sequencing (NGS)
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How NGS influences clinical care
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Some issues
• Legal-ethical issues related to new data processing
techniques
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Some new developments
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Some issues
Legal-ethical issues related to the
introduction of NGS (1)
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How NGS influences clinical care
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Sequencing and storing patient’s DNA-code becomes standard procedure
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Tendency to extend scope of genetic testing to larger parts of genome or
whole genome
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Availability of predictive genetic data on a large scale
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Storage of test results for long periods and accessibility for other care
providers and researchers
Legal-ethical issues related to the
introduction of NGS (2)
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Some issues
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Reshaping informed consent
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Knowing/not-knowing future health risks (open future of children!)
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New responsibilities for physician, such as duty to re-contact
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Secondary use of data for research
Legal-ethical issues related to new data
processing techniques (1)
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Some new developments
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National electronic patient records
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Cloud computing
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Large databases/data sharing (‘big data’)
Legal-ethical issues related to new data
processing techniques (2)
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Some issues
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Who carries legal responsibility for data processing? (often unclear)
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Different privacy regimes (which law is applicable?)
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Difficulties with guaranteeing medical confidentiality and data security
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Increased threat of access by justice or security services, e.g. on basis of USPatriot Act