May 1, 2020 Report Open Access

Mats Hansson; Solveig Fenet-Chantereau

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        "title": "Stakeholder-informed ethics for new technologies with high socio-economic and human rights impact", 
        "acronym": "SIENNA", 
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    "publication_date": "2020-05-01", 
    "creators": [
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        "affiliation": "Uppsala University", 
        "name": "Mats Hansson"
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        "affiliation": "Uppsala University", 
        "name": "Solveig Fenet-Chantereau"
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    "description": "<p>This SIENNA report 2.7 provides an assessment and integration of key results from SIENNA Reports 2.2, 2,3, 2.4, 2.5 and 2.6. A basic learning from these reports is that one has to acknowledge a need to balance different interests against each other, i.e. important human rights for the protection of basic freedoms against human rights related to the potential of benefiting from scientific advances.&nbsp;The report emphasize that ethics&nbsp;must&nbsp;be an integral&nbsp;reflective&nbsp;part of the conduct of science as well as of clinical practice. A principled approach for such a reflective work is suggested to be part of a framework for ethical assessment both of genomic technologies at large and for research in genetics and genomics. The framework proposes a set of nine ethical principles and questions for ethical self- assessment in genetic and genomics research. For emerging technologies in human genetics and genomics where there is yet not sufficient backing in basic science or animal experiments but a possibility for clinical application within a context of compassionate treatment a special governance structure is suggested with an international organization setting up an institute of a&nbsp;Patient Ombudsman.</p>\n\n<p>*This report is based partly on the SIENNA results reported in 2.2 2.3, 2.4, 2.5 and 2.6, thus with due acknowledgement to contributors to these reports</p>"
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