Literature DB >> 21918887

Withdrawing from research: a rethink in the context of research biobanks.

Søren Holm1.   

Abstract

It is generally assumed in research ethics that research participants have an unconditional right to withdraw from research without any detriment or reprisal. This paper analyses this right in the context of biobank research and argues that the traditional shape of the right in clinical research can be modified in biobank research without incurring significant ethical cost. The paper falls in three parts. The first part is a brief explication of the philosophical justification of the right to withdraw. The second part presents a number of extant criticisms of the right. And the third and final part argues that although a right to withdraw is crucial in relation to biobank research, such a right has to be specified in a different way to the similar right in relation to clinical research.

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Year:  2011        PMID: 21918887     DOI: 10.1007/s10728-011-0194-8

Source DB:  PubMed          Journal:  Health Care Anal        ISSN: 1065-3058


  11 in total

1.  The charitable trust as a model for genomic biobanks.

Authors:  David E Winickoff; Richard N Winickoff
Journal:  N Engl J Med       Date:  2003-09-18       Impact factor: 91.245

2.  The inalienable right to withdraw from research.

Authors:  Terrance McConnell
Journal:  J Law Med Ethics       Date:  2010       Impact factor: 1.718

3.  Scientific research is a moral duty.

Authors:  John Harris
Journal:  J Med Ethics       Date:  2005-04       Impact factor: 2.903

4.  Potential harms, anonymization, and the right to withdraw consent to biobank research.

Authors:  Stefan Eriksson; Gert Helgesson
Journal:  Eur J Hum Genet       Date:  2005-09       Impact factor: 4.246

Review 5.  Clinical trials of xenotransplantation: waiver of the right to withdraw from a clinical trial should be required.

Authors:  Monique A Spillman; Robert M Sade
Journal:  J Law Med Ethics       Date:  2007       Impact factor: 1.718

6.  Against the inalienable right to withdraw from research.

Authors:  Eric Chwang
Journal:  Bioethics       Date:  2008-06-28       Impact factor: 1.898

7.  The right to withdraw consent to research on biobank samples.

Authors:  Gert Helgesson; Linus Johnsson
Journal:  Med Health Care Philos       Date:  2005

8.  The right to withdraw from research.

Authors:  G Owen Schaefer; Alan Wertheimer
Journal:  Kennedy Inst Ethics J       Date:  2010-12

9.  Research participation and the right to withdraw.

Authors:  Sarah J L Edwards
Journal:  Bioethics       Date:  2005-04       Impact factor: 1.898

10.  Should patients be allowed to veto their participation in clinical research?

Authors:  H M Evans
Journal:  J Med Ethics       Date:  2004-04       Impact factor: 2.903

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  5 in total

Review 1.  The tension between data sharing and the protection of privacy in genomics research.

Authors:  Jane Kaye
Journal:  Annu Rev Genomics Hum Genet       Date:  2012-03-09       Impact factor: 8.929

2.  Withdrawal from biobank research: considerations and the way forward.

Authors:  Kristina Hug; Göran Hermerén; Mats Johansson
Journal:  Stem Cell Rev Rep       Date:  2012-12       Impact factor: 5.739

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

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

4.  The evolution of withdrawal: negotiating research relationships in biobanking.

Authors:  Karen Melham; Linda Briceno Moraia; Colin Mitchell; Michael Morrison; Harriet Teare; Jane Kaye
Journal:  Life Sci Soc Policy       Date:  2014-10-05

5.  Biobanking across the phenome - at the center of chronic disease research.

Authors:  Medea Imboden; Nicole M Probst-Hensch
Journal:  BMC Public Health       Date:  2013-11-25       Impact factor: 3.295

  5 in total

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