Literature DB >> 23823164

Benefit sharing and biobanking in Australia.

Dianne Nicol1, Christine Critchley.   

Abstract

Biobanks are essential tools for facilitating biomedical research, because they provide collections of human tissue linked with personal information. There is still little understanding of the underlying reasons why people participate in biobanking in the increasingly commercialised and internationalised biomedical research environment. This paper reports the results of an Australia-wide telephone survey. The paper analyses the types of obligations that members of the public may wish to see incorporated in biobank benefit sharing arrangements and the extent to which their views might be influenced by underlying norms of sharing behaviour. Latent class analysis of the dataset reveals three distinct classes of respondents. We link one of these with the norm of reciprocity, one with the norm of social responsibility. The third is not clearly linked with any one norm of sharing behaviour. The implications of these findings on biobank benefit sharing arrangements are discussed.

Entities:  

Keywords:  attitudes on genetics; governance of science and technology; health and new technologies; public consultations; public participation

Year:  2011        PMID: 23823164     DOI: 10.1177/0963662511402425

Source DB:  PubMed          Journal:  Public Underst Sci        ISSN: 0963-6625


  9 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.  The impact of commercialisation on public perceptions of stem cell research: exploring differences across the use of induced pluripotent cells, human and animal embryos.

Authors:  Christine R Critchley; Gordana Bruce; Matthew Farrugia
Journal:  Stem Cell Rev Rep       Date:  2013-10       Impact factor: 5.739

3.  Encouraging Participation And Transparency In Biobank Research.

Authors:  Kayte Spector-Bagdady; Raymond G De Vries; Michele G Gornick; Andrew G Shuman; Sharon Kardia; Jodyn Platt
Journal:  Health Aff (Millwood)       Date:  2018-08       Impact factor: 6.301

4.  Managing incidental findings and research results in genomic research involving biobanks and archived data sets.

Authors:  Susan M Wolf; Brittney N Crock; Brian Van Ness; Frances Lawrenz; Jeffrey P Kahn; Laura M Beskow; Mildred K Cho; Michael F Christman; Robert C Green; Ralph Hall; Judy Illes; Moira Keane; Bartha M Knoppers; Barbara A Koenig; Isaac S Kohane; Bonnie Leroy; Karen J Maschke; William McGeveran; Pilar Ossorio; Lisa S Parker; Gloria M Petersen; Henry S Richardson; Joan A Scott; Sharon F Terry; Benjamin S Wilfond; Wendy A Wolf
Journal:  Genet Med       Date:  2012-04       Impact factor: 8.822

Review 5.  Current practice of public involvement activities in biomedical research and innovation: a systematic qualitative review.

Authors:  Jonas Lander; Tobias Hainz; Irene Hirschberg; Daniel Strech
Journal:  PLoS One       Date:  2014-12-03       Impact factor: 3.240

6.  Better governance starts with better words: why responsible human tissue research demands a change of language.

Authors:  Michael A Lensink; Karin R Jongsma; Sarah N Boers; Annelien L Bredenoord
Journal:  BMC Med Ethics       Date:  2022-09-01       Impact factor: 2.834

7.  "You hoped we would sleep walk into accepting the collection of our data": controversies surrounding the UK care.data scheme and their wider relevance for biomedical research.

Authors:  Sigrid Sterckx; Vojin Rakic; Julian Cockbain; Pascal Borry
Journal:  Med Health Care Philos       Date:  2016-06

8.  Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives.

Authors:  J Patrick Woolley; Michelle L McGowan; Harriet J A Teare; Victoria Coathup; Jennifer R Fishman; Richard A Settersten; Sigrid Sterckx; Jane Kaye; Eric T Juengst
Journal:  BMC Med Ethics       Date:  2016-06-04       Impact factor: 2.652

Review 9.  A scoping review of considerations and practices for benefit sharing in biobanking.

Authors:  Allan Sudoi; Jantina De Vries; Dorcas Kamuya
Journal:  BMC Med Ethics       Date:  2021-07-27       Impact factor: 2.652

  9 in total

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