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[Bioethical principles concerning human genetic data].

Ricardo Cruz-Coke1

  • 1Departamento de Bioética y Humanidades Médicas, Servicio de Genética, Hospital Clínico, Facultad de Medicina, Universidad de Chile, Santiago de Chile, Chile.

Revista De Derecho Y Genoma Humano = Law and the Human Genome Review
|March 23, 2004
PubMed
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The Universal Declaration on the Human Genome and Human Rights needs specific rules for genetic data in research. This paper discusses a new international declaration to protect human rights concerning genetic information.

Area of Science:

  • Bioethics
  • Genetics
  • Human Rights Law

Context:

  • UNESCO's 1997 Declaration on the Human Genome and Human Rights is widely accepted.
  • Biomedical research requires specific regulations for human genetic data, samples, and derived information.
  • Handling genetic material poses risks to human rights.

Purpose:

  • To present and comment on a new international declaration concerning human genetic data.
  • To address the need for specific rules on data regulation, sample handling, and information use in genetic research.

Summary:

  • The author, involved in drafting the declaration, outlines its key provisions.
  • The declaration aims to provide a framework for the ethical and legal governance of human genetic data.
  • It addresses the collection, processing, use, and storage of genetic material.

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Impact:

  • Enhances the protection of human rights in the context of genetic research.
  • Provides a legal and ethical foundation for international collaboration in genomics.
  • Promotes responsible innovation in biomedical research while safeguarding individual liberties.