Personalisierte Medizin und Informed Consent: Klinische und ethische Erwägungen im Rahmen der Entwicklung einer Best Practice Leitlinie für die biobankbasierte Ganzgenomforschung in der Onkologie

Publikation: Beitrag in FachzeitschriftForschungsartikelBeigetragenBegutachtung

Beitragende

  • Eva C. Winkler - , Nationales Zentrum für Tumorerkrankungen (NCT) Heidelberg (Autor:in)
  • Dominik Ose - , Universität Heidelberg (Autor:in)
  • Hanno Glimm - , Nationales Centrum für Tumorerkrankungen Dresden, Translationale Onkologie (Autor:in)
  • Klaus Tanner - , Universität Heidelberg (Autor:in)
  • Christof von Kalle - , Translationale Onkologie (Autor:in)

Abstract

Definition of the problem Breakthrough discoveries in genomics allow the sequencing of the human genome within a couple of days at a reasonable price. In cancer research, whole genome sequencing helps to identify the molecular lesions that drive tumour growth and thereby provide the basis for the development of targeted therapies. However, genomic research also raises new ethical questions. The interdisciplinary EURAT project in Heidelberg (Germany) addresses these normative questions. It aims at developing an ethically and legally informed practice for biobank-based genomic research in Heidelberg. Arguments This paper gives an overview of the relevant ethical and clinical questions of biobank-based genomic sequencing with regard to the informed consent process. It also presents a code of conduct as an institutional ethics response to the following question: how research institutions can foster the responsible handling of genetic information in biobank-based research throughout the institution. Conclusion A thorough informed consent process and the code of conduct are elements of a best-practice guideline and should be a guide for responsible conduct of all employees who handle sensitive genetic data.

Details

OriginalspracheDeutsch
Seiten (von - bis)195-203
Seitenumfang9
FachzeitschriftEthik in der Medizin
Jahrgang25
Ausgabenummer3
PublikationsstatusVeröffentlicht - Sept. 2013
Peer-Review-StatusJa

Schlagworte

Ziele für nachhaltige Entwicklung

Schlagwörter

  • Biobank, Code of conduct, High throughput sequencing, Incidental findings, Informed consent