Literature DB >> 21938513

Accountability, governance and biobanks: the ethics and governance committee as guardian or as toothless tiger?

Jean V McHale1.   

Abstract

The huge potential of biobanks/genetic databases for the research community has been recognised across jurisdictions in both publicly funded and commercial sectors. But although there is tremendous potential there are likewise potential difficulties. The long-term storage of personal health information and samples poses major challenges. This is an area is fraught with ethical and legal uncertainties. Biobanks raise many questions of the control of rights, of consent, of privacy and confidentiality and of property in human material. It is thus unsurprising then that there has been a lively debate as to how biobanks should operate, the boundaries of participation and what governance structure, if any they should adopt, a debate which has been engaged in across the academic community and by funders and researchers alike. This paper asks despite the good intentions can ad hoc ethics and ethics and governance committees long term provide an effective solution to the legal and regulatory challenges arising from biobanks.

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Year:  2011        PMID: 21938513     DOI: 10.1007/s10728-011-0195-7

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


  7 in total

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7.  Property: the future of human tissue?

Authors:  Muireann Quigley
Journal:  Med Law Rev       Date:  2009-10-22       Impact factor: 1.267

  7 in total
  3 in total

1.  Power to the people: a wiki-governance model for biobanks.

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Journal:  Genome Biol       Date:  2012-05-29       Impact factor: 13.583

2.  Oversight of EU medical data transfers - an administrative law perspective on cross-border biomedical research administration.

Authors:  Jane Reichel
Journal:  Health Technol (Berl)       Date:  2017-03-07

3.  Croatian National Centre for Biobanking--a new perspective in biobanks governance?

Authors:  Ana Borovečki; Luciana Caenazzo; Davor Ježek; Monika Karija-Vlahović; Branka Golubić
Journal:  Croat Med J       Date:  2014-08-28       Impact factor: 1.351

  3 in total

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