El consentimiento informado ante los biobancos y la investigación genética

  1. Casado da Rocha, Antonio
  2. Etxeberria Agiriano, Arantza
Journal:
Arbor: ciencia, pensamiento y cultura

ISSN: 0210-1963

Year of publication: 2008

Issue Title: Ética de la investigación

Issue: 730

Pages: 249-260

Type: Article

DOI: 10.3989/ARBOR.2008.I730.176 DIALNET GOOGLE SCHOLAR lock_openOpen access editor

More publications in: Arbor: ciencia, pensamiento y cultura

Sustainable development goals

Abstract

Partially as a consequence of the results of the Human Genome Project, reductionist and determinist positions in genetics have been generally replaced by a more systemic view. In this paper we examine some consequences of this paradigm shift upon biobanks and the way research is to take place through them. Biobanks are shown to challenge to a certain degree the traditional rules in genetic research. Although there are pressing issues concerning privacy and confidentiality, the most visible area of disagreement has to do with informed consent. There is a gap between theory and practice, as most documents and declarations at the global level insist on the need of genuine informed consent, but this requirement faces serious problems of implementation. Thus the demands of research are bringing about new ¿open consent¿ models, which are making their way into legislation, as in the new Spanish Law on Biomedical Research.

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