May 1, 2020 Report Open Access

Mats Hansson; Solveig Fenet-Chantereau

DCAT Export

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        <foaf:name>Mats Hansson</foaf:name>
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        <foaf:name>Solveig Fenet-Chantereau</foaf:name>
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    <dct:title>SIENNA D2.7: Proposal for an ethical framework for the assessment of genomics technologies and for research in genetics and genomics</dct:title>
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    <dcat:keyword>Genetics</dcat:keyword>
    <dcat:keyword>genomics</dcat:keyword>
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    <dcat:keyword>ethics self-assessment</dcat:keyword>
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    <dct:description>&lt;p&gt;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.&amp;nbsp;The report emphasize that ethics&amp;nbsp;must&amp;nbsp;be an integral&amp;nbsp;reflective&amp;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&amp;nbsp;Patient Ombudsman.&lt;/p&gt; &lt;p&gt;*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&lt;/p&gt;</dct:description>
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