May 1, 2020 Report Open Access

Mats Hansson; Solveig Fenet-Chantereau

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{
  "publisher": "Zenodo", 
  "DOI": "10.5281/zenodo.7266806", 
  "language": "eng", 
  "title": "SIENNA D2.7: Proposal for an ethical framework for the assessment of genomics technologies and for research in genetics and genomics", 
  "issued": {
    "date-parts": [
      [
        2020, 
        5, 
        1
      ]
    ]
  }, 
  "abstract": "<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>", 
  "author": [
    {
      "family": "Mats Hansson"
    }, 
    {
      "family": "Solveig Fenet-Chantereau"
    }
  ], 
  "version": "V1.3", 
  "type": "article", 
  "id": "7266806"
}