Report Open Access

SIENNA D2.7: Proposal for an ethical framework for the assessment of genomics technologies and for research in genetics and genomics

Mats Hansson; Solveig Fenet-Chantereau

MARC21 XML Export

<?xml version='1.0' encoding='UTF-8'?>
<record xmlns="">
  <datafield tag="041" ind1=" " ind2=" ">
    <subfield code="a">eng</subfield>
  <datafield tag="653" ind1=" " ind2=" ">
    <subfield code="a">Genetics</subfield>
  <datafield tag="653" ind1=" " ind2=" ">
    <subfield code="a">genomics</subfield>
  <datafield tag="653" ind1=" " ind2=" ">
    <subfield code="a">research</subfield>
  <datafield tag="653" ind1=" " ind2=" ">
    <subfield code="a">framework</subfield>
  <datafield tag="653" ind1=" " ind2=" ">
    <subfield code="a">ethics self-assessment</subfield>
  <datafield tag="653" ind1=" " ind2=" ">
    <subfield code="a">ethics review</subfield>
  <controlfield tag="005">20221031142623.0</controlfield>
  <controlfield tag="001">7266806</controlfield>
  <datafield tag="700" ind1=" " ind2=" ">
    <subfield code="u">Uppsala University</subfield>
    <subfield code="a">Solveig Fenet-Chantereau</subfield>
  <datafield tag="856" ind1="4" ind2=" ">
    <subfield code="s">1066675</subfield>
    <subfield code="z">md5:982dca8b9fa6d6a44a0690400567fd3c</subfield>
    <subfield code="u"> D2.7 Proposal for an ethical framework for the assessment of genomics technologies and for research in genetics and genomics.pdf</subfield>
  <datafield tag="542" ind1=" " ind2=" ">
    <subfield code="l">open</subfield>
  <datafield tag="260" ind1=" " ind2=" ">
    <subfield code="c">2020-05-01</subfield>
  <datafield tag="909" ind1="C" ind2="O">
    <subfield code="p">openaire</subfield>
    <subfield code="o"></subfield>
  <datafield tag="100" ind1=" " ind2=" ">
    <subfield code="u">Uppsala University</subfield>
    <subfield code="a">Mats Hansson</subfield>
  <datafield tag="245" ind1=" " ind2=" ">
    <subfield code="a">SIENNA D2.7: Proposal for an ethical framework for the assessment of genomics technologies and for research in genetics and genomics</subfield>
  <datafield tag="536" ind1=" " ind2=" ">
    <subfield code="c">741716</subfield>
    <subfield code="a">Stakeholder-informed ethics for new technologies with high socio-economic and human rights impact</subfield>
  <datafield tag="540" ind1=" " ind2=" ">
    <subfield code="u"></subfield>
    <subfield code="a">Creative Commons Attribution 4.0 International</subfield>
  <datafield tag="650" ind1="1" ind2="7">
    <subfield code="a">cc-by</subfield>
    <subfield code="2"></subfield>
  <datafield tag="520" ind1=" " ind2=" ">
    <subfield code="a">&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;</subfield>
  <datafield tag="773" ind1=" " ind2=" ">
    <subfield code="n">doi</subfield>
    <subfield code="i">isVersionOf</subfield>
    <subfield code="a">10.5281/zenodo.7266805</subfield>
  <datafield tag="024" ind1=" " ind2=" ">
    <subfield code="a">10.5281/zenodo.7266806</subfield>
    <subfield code="2">doi</subfield>
  <datafield tag="980" ind1=" " ind2=" ">
    <subfield code="a">publication</subfield>
    <subfield code="b">report</subfield>
All versions This version
Views 122122
Downloads 5757
Data volume 60.8 MB60.8 MB
Unique views 112112
Unique downloads 5454


Cite as