Literature DB >> 22836808

Withdrawal from biobank research: considerations and the way forward.

Kristina Hug1, Göran Hermerén, Mats Johansson.   

Abstract

The right to withdraw one's consent after having agreed to participate in research is a fundamental principle in contemporary research ethics. However, it has been questioned whether this right should apply to research conducted on donated biological samples, including stem cells and tissues from which stem cells can be derived. In this article we present some of the concerns that have been expressed related to this question. We then identify five areas that one needs to pay greater attention to before any conclusions can be drawn as to whether donors should be given the right to withdraw, or under what circumstances withdrawal should be allowed.

Mesh:

Year:  2012        PMID: 22836808     DOI: 10.1007/s12015-012-9399-y

Source DB:  PubMed          Journal:  Stem Cell Rev Rep        ISSN: 2629-3277            Impact factor:   5.739


  30 in total

1.  'Science is really needed--that's all I know': informed consent and the non-verbal practices of collecting blood for genetic research in northern Sweden.

Authors:  Klaus Hoeyer
Journal:  New Genet Soc       Date:  2003-12

2.  Human genetic banking: altruism, benefit and consent.

Authors:  Garrath Williams; Doris Schroeder
Journal:  New Genet Soc       Date:  2004-04

Review 3.  Beyond the 'embryo question': human embryonic stem cell ethics in the context of biomaterial donation in the UK.

Authors:  G Bahadur; M Morrison; L Machin
Journal:  Reprod Biomed Online       Date:  2010-12       Impact factor: 3.828

Review 4.  The social and ethical issues of post-genomic human biobanks.

Authors:  Anne Cambon-Thomsen
Journal:  Nat Rev Genet       Date:  2004-11       Impact factor: 53.242

5.  Consent revisited: points to consider.

Authors:  Bartha Maria Knoppers
Journal:  Health Law Rev       Date:  2005

6.  Informed consent in biobank research: a deliberative approach to the debate.

Authors:  David M Secko; Nina Preto; Simon Niemeyer; Michael M Burgess
Journal:  Soc Sci Med       Date:  2008-12-16       Impact factor: 4.634

7.  Alternative consent models for biobanks: the new Spanish law on biomedical research.

Authors:  Antonio Casado da Rocha; José Antonio Seoane
Journal:  Bioethics       Date:  2008-07-17       Impact factor: 1.898

8.  Lessons from European population genetic databases: comparing the law in Estonia, Iceland, Sweden and the United Kingdom.

Authors:  Susan M C Gibbons; Hördur Helgi Helgason; Jane Kaye; Ants Nõmper; Lotta Wendel
Journal:  Eur J Health Law       Date:  2005-06

9.  Perceptions of potential donors in the Swedish public towards information and consent procedures in relation to use of human tissue samples in biobanks: a population-based study.

Authors:  Asa Kettis-Lindblad; Lena Ring; Eva Viberth; Mats G Hansson
Journal:  Scand J Public Health       Date:  2007       Impact factor: 3.021

10.  Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine: convention on human rights and biomedicine (adopted by the Committee of Ministers on 19 November 1996). Council of Europe Convention of Biomedicine.

Authors: 
Journal:  Hum Reprod       Date:  1997-09       Impact factor: 6.918

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  2 in total

1.  Policy recommendations for addressing privacy challenges associated with cell-based research and interventions.

Authors:  Ubaka Ogbogu; Sarah Burningham; Adam Ollenberger; Kathryn Calder; Li Du; Khaled El Emam; Robyn Hyde-Lay; Rosario Isasi; Yann Joly; Ian Kerr; Bradley Malin; Michael McDonald; Steven Penney; Gayle Piat; Denis-Claude Roy; Jeremy Sugarman; Suzanne Vercauteren; Griet Verhenneman; Lori West; Timothy Caulfield
Journal:  BMC Med Ethics       Date:  2014-02-03       Impact factor: 2.652

2.  Cancer patient perceptions on the ethical and legal issues related to biobanking.

Authors:  Zubin Master; Jaime O Claudio; Christen Rachul; Jean C Y Wang; Mark D Minden; Timothy Caulfield
Journal:  BMC Med Genomics       Date:  2013-03-08       Impact factor: 3.063

  2 in total

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