May 1, 2020 Report Open Access

Mats Hansson; Solveig Fenet-Chantereau

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  <identifier identifierType="DOI">10.5281/zenodo.7266806</identifier>
  <creators>
    <creator>
      <creatorName>Mats Hansson</creatorName>
      <affiliation>Uppsala University</affiliation>
    </creator>
    <creator>
      <creatorName>Solveig Fenet-Chantereau</creatorName>
      <affiliation>Uppsala University</affiliation>
    </creator>
  </creators>
  <titles>
    <title>SIENNA D2.7: Proposal for an ethical framework for the assessment of genomics technologies and for research in genetics and genomics</title>
  </titles>
  <publisher>Zenodo</publisher>
  <publicationYear>2020</publicationYear>
  <subjects>
    <subject>Genetics</subject>
    <subject>genomics</subject>
    <subject>research</subject>
    <subject>framework</subject>
    <subject>ethics self-assessment</subject>
    <subject>ethics review</subject>
  </subjects>
  <dates>
    <date dateType="Issued">2020-05-01</date>
  </dates>
  <language>en</language>
  <resourceType resourceTypeGeneral="Report"/>
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    <rights rightsURI="https://creativecommons.org/licenses/by/4.0/legalcode">Creative Commons Attribution 4.0 International</rights>
    <rights rightsURI="info:eu-repo/semantics/openAccess">Open Access</rights>
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  <descriptions>
    <description descriptionType="Abstract">&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;</description>
  </descriptions>
  <fundingReferences>
    <fundingReference>
      <funderName>European Commission</funderName>
      <funderIdentifier funderIdentifierType="Crossref Funder ID">10.13039/100010661</funderIdentifier>
      <awardNumber awardURI="info:eu-repo/grantAgreement/EC/H2020/741716/">741716</awardNumber>
      <awardTitle>Stakeholder-informed ethics for new technologies with high socio-economic and human rights impact</awardTitle>
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