Literature DB >> 22722687

Consent and research governance in biobanks: evidence from focus groups with medical researchers.

E A Whitley1, N Kanellopoulou, J Kaye.   

Abstract

Much is known about patient attitudes to ethical and legal questions in the context of biobanking, particularly regarding privacy protection and consent. However, little is known about the attitudes of medical researchers who use biobanks for research to these issues. Four focus groups with medical researchers in the UK were conducted in 2010-2011. The study highlights a range of issues associated with the research oversight and consent process (including obtaining ethical approval to use biobank samples and particular concerns for international studies), the benefits and limitations of broad consent and the possibilities of revoking consent. Many of these issues originate in the relatively static consent processes that currently govern the biobanking process. However, it is now possible to develop reliable, dynamic processes using information technology that can resolve many of these ethical and legal concerns. The 'dynamic consent' approach therefore offers the opportunity to fundamentally transform the process of medical research in a manner that addresses the concerns of both patients and medical researchers.
Copyright © 2012 S. Karger AG, Basel.

Entities:  

Mesh:

Year:  2012        PMID: 22722687     DOI: 10.1159/000336544

Source DB:  PubMed          Journal:  Public Health Genomics        ISSN: 1662-4246            Impact factor:   2.000


  19 in total

Review 1.  Health professionals' opinions on supporting a cancer biobank: identification of barriers to combat biobanking pitfalls.

Authors:  Nicole J Caixeiro; Hei Lan Byun; Joseph Descallar; Janelle V Levesque; Paul de Souza; Cheok Soon Lee
Journal:  Eur J Hum Genet       Date:  2015-09-02       Impact factor: 4.246

2.  Scientists' perspectives on consent in the context of biobanking research.

Authors:  Zubin Master; Lisa Campo-Engelstein; Timothy Caulfield
Journal:  Eur J Hum Genet       Date:  2014-07-30       Impact factor: 4.246

3.  Key challenges for next-generation pharmacogenomics: Science & Society series on Science and Drugs.

Authors:  Kostas Kampourakis; Effy Vayena; Christina Mitropoulou; Ron H van Schaik; David N Cooper; Joseph Borg; George P Patrinos
Journal:  EMBO Rep       Date:  2014-04-10       Impact factor: 8.807

4.  Deliberative Discussion Focus Groups.

Authors:  Erin Rothwell; Rebecca Anderson; Jeffrey R Botkin
Journal:  Qual Health Res       Date:  2015-06-15

5.  Biobanking: The Melding of Research with Clinical Care.

Authors:  Maureen E Smith; Sharon Aufox
Journal:  Curr Genet Med Rep       Date:  2013-06

6.  Did I Tell You That? Ethical Issues Related to Using Computational Methods to Discover Non-Disclosed Patient Characteristics.

Authors:  Kenrick D Cato; Walter Bockting; Elaine Larson
Journal:  J Empir Res Hum Res Ethics       Date:  2016-07       Impact factor: 1.742

7.  Broad consent versus dynamic consent in biobank research: is passive participation an ethical problem?

Authors:  Kristin Solum Steinsbekk; Bjørn Kåre Myskja; Berge Solberg
Journal:  Eur J Hum Genet       Date:  2013-01-09       Impact factor: 4.246

8.  Redefining genomic privacy: trust and empowerment.

Authors:  Yaniv Erlich; James B Williams; David Glazer; Kenneth Yocum; Nita Farahany; Maynard Olson; Arvind Narayanan; Lincoln D Stein; Jan A Witkowski; Robert C Kain
Journal:  PLoS Biol       Date:  2014-11-04       Impact factor: 8.029

9.  Evaluating the consent preferences of UK research volunteers for genetic and clinical studies.

Authors:  Susan E Kelly; Timothy D Spector; Lynn F Cherkas; Barbara Prainsack; Juliette M Harris
Journal:  PLoS One       Date:  2015-03-11       Impact factor: 3.240

10.  Dynamic consent: a patient interface for twenty-first century research networks.

Authors:  Jane Kaye; Edgar A Whitley; David Lund; Michael Morrison; Harriet Teare; Karen Melham
Journal:  Eur J Hum Genet       Date:  2014-05-07       Impact factor: 4.246

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