Literature DB >> 16295921

Iceland's plan for genomics research: facts and implications.

H T Greely1.   

Abstract

The government of Iceland has authorized a private, for-profit firm, deCODE Genetics, to construct a database of the population's medical records as part of a larger plan by deCODE for human genetics research. This article presents the background for genetics research in Iceland, the history of deCODE, and the terms of the law authorizing the database. It then examines five objections to the law, based on commercialization, lack of informed consent, risks to privacy, the effects of other research, and financial unfairness. It concludes that the Icelandic model is not a good precedent for similar research elsewhere.

Entities:  

Keywords:  Biomedical and Behavioral Research; Genetics and Reproduction; Legal Approach; deCode Genetics

Mesh:

Year:  2000        PMID: 16295921

Source DB:  PubMed          Journal:  Jurimetrics        ISSN: 0897-1277


  7 in total

1.  Determining the identifiability of DNA database entries.

Authors:  B Malin; L Sweeney
Journal:  Proc AMIA Symp       Date:  2000

2.  Commentary on models of biobanks and implications for reproductive health innovation.

Authors:  Einar Árnason
Journal:  Monash Bioeth Rev       Date:  2015-12

3.  The informed consent aftermath of the genetic revolution. An Italian example of implementation.

Authors:  Federica Artizzu
Journal:  Med Health Care Philos       Date:  2007-07-19

4.  Re-identification of DNA through an automated linkage process.

Authors:  B Malin; L Sweeney
Journal:  Proc AMIA Symp       Date:  2001

5.  Human embryos and eggs: from long-term storage to biobanking.

Authors:  Françoise Baylis; Heather Widdows
Journal:  Monash Bioeth Rev       Date:  2015-12

6.  Genetic research with stored biological materials: ethics and practice.

Authors:  Leslie E Wolf; Timothy A Bouley; Charles E McCulloch
Journal:  IRB       Date:  2010 Mar-Apr

7.  Guidelines for reporting secondary findings of genome sequencing in cancer genes: the SFMPP recommendations.

Authors:  Pascal Pujol; Pierre Vande Perre; Laurence Faivre; Damien Sanlaville; Carole Corsini; Bernard Baertschi; Michèle Anahory; Dominique Vaur; Sylviane Olschwang; Nadem Soufir; Noëlle Bastide; Sarah Amar; Michèle Vintraud; Olivier Ingster; Stéphane Richard; Pierre Le Coz; Jean-Philippe Spano; Olivier Caron; Pascal Hammel; Elisabeth Luporsi; Alain Toledano; Xavier Rebillard; Anne Cambon-Thomsen; Olivier Putois; Jean-Marc Rey; Christian Hervé; Caroline Zorn; Karen Baudry; Virginie Galibert; Joseph Gligorov; David Azria; Brigitte Bressac-de Paillerets; Nelly Burnichon; Marc Spielmann; Daniel Zarca; Isabelle Coupier; Olivier Cussenot; Anne-Paule Gimenez-Roqueplo; Sophie Giraud; Anne-Sophie Lapointe; Patricia Niccoli; Isabelle Raingeard; Muriel Le Bidan; Thierry Frebourg; Arash Rafii; David Geneviève
Journal:  Eur J Hum Genet       Date:  2018-08-08       Impact factor: 4.246

  7 in total

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