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

Research output: Contribution to journalResearch articleContributedpeer-review

Contributors

  • Eva C. Winkler - , National Center for Tumor Diseases (NCT) Heidelberg (Author)
  • Dominik Ose - , Heidelberg University  (Author)
  • Hanno Glimm - , National Center for Tumor Diseases Dresden, Translationale Onkologie (Author)
  • Klaus Tanner - , Heidelberg University  (Author)
  • Christof von Kalle - , Translationale Onkologie (Author)

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.

Translated title of the contribution
Personalized medicine and informed consent
Clinical and ethical considerations for developing a best practice guideline for biobank-based next generation sequencing in oncology

Details

Original languageGerman
Pages (from-to)195-203
Number of pages9
JournalEthik in der Medizin
Volume25
Issue number3
Publication statusPublished - Sept 2013
Peer-reviewedYes

Keywords

Sustainable Development Goals

Keywords

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