Article

The genomic data deficit: On the need to inform research subjects of the informational content of their genomic sequence data in consent for genomic research

2020-05-12

Abstract excerpt

Research subject consent plays a significant role in the legitimation of genomic research in Europe – both ethically and legally. One key criterion for any consent to be legitimate is that the research subject is ‘informed’. This criterion implies that the research subject is given all relevant information to allow them to decide whether engaging with a genomic research infrastructure or project would be normative...

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Literature Corpus work: b65de410-e597-555c-8eb9-669604420115
DOI: 10.1016/j.clsr.2020.105427

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