Literature DB >> 26712609

Ethically sustainable governance in the biobanking of eggs and embryos for research.

Karla Stroud1, Kieran C O'Doherty2.   

Abstract

Biobanking of human tissues is associated with a range of ethical, legal, and social (ELS) challenges. These include difficulties in operationalising informed consent protocols, protecting donors' privacy, managing the return of incidental findings, conceptualising ownership of tissues, and benefit sharing. Though largely unresolved, these challenges are well documented and debated in academic literature. One common response to the ELS challenges of biobanks is a call for strong and independent governance of biobanks. Theorists who argue along these lines suggest that since fully informed consent to a single research project is often not feasible, research participants should be given the additional protection of being allowed to consent to the governance framework of the biobank. Such governance therefore needs to be transparent and ethically sustainable. In this paper we review the governance challenges of establishing and maintaining human tissue biobanks. We then discuss how the creation of a biobank for eggs and embryos, in particular, may introduce additional or unique challenges beyond those presented by the biobanking of other human tissues. Following previous work on biobank governance, we argue that ethically sustainable governance needs to be participatory, adaptive, and trustworthy.

Entities:  

Keywords:  Biobank; Eggs; Embryos; Governance; Public engagement; Stem cells

Mesh:

Year:  2015        PMID: 26712609     DOI: 10.1007/s40592-015-0047-6

Source DB:  PubMed          Journal:  Monash Bioeth Rev        ISSN: 1321-2753


  32 in total

1.  Egg donation for stem cell research: ideas of surplus and deficit in Australian IVF patients' and reproductive donors' accounts.

Authors:  Catherine Waldby; Katherine Carroll
Journal:  Sociol Health Illn       Date:  2011-09-19

Review 2.  From genetic privacy to open consent.

Authors:  Jeantine E Lunshof; Ruth Chadwick; Daniel B Vorhaus; George M Church
Journal:  Nat Rev Genet       Date:  2008-05       Impact factor: 53.242

3.  From consent to institutions: designing adaptive governance for genomic biobanks.

Authors:  Kieran C O'Doherty; Michael M Burgess; Kelly Edwards; Richard P Gallagher; Alice K Hawkins; Jane Kaye; Veronica McCaffrey; David E Winickoff
Journal:  Soc Sci Med       Date:  2011-07-02       Impact factor: 4.634

4.  (Re)constructing embryos in stem cell research: exploring the meaning of embryos for people involved in fertility treatments.

Authors:  Sarah Parry
Journal:  Soc Sci Med       Date:  2005-11-14       Impact factor: 4.634

5.  Reflections by patients who undergo IVF on the use of their supernumerary embryos for science.

Authors:  V Provoost; G Pennings; P De Sutter; J Gerris; A Van de Velde; M Dhont
Journal:  Reprod Biomed Online       Date:  2010-03-11       Impact factor: 3.828

6.  Public opinion about the importance of privacy in biobank research.

Authors:  David J Kaufman; Juli Murphy-Bollinger; Joan Scott; Kathy L Hudson
Journal:  Am J Hum Genet       Date:  2009-10-29       Impact factor: 11.025

7.  The politics of cloning: mapping the rhetorical convergence of embyros and stem cells in parliamentary debates.

Authors:  Sarah Parry
Journal:  New Genet Soc       Date:  2003-08

8.  Trends in ethical and legal frameworks for the use of human biobanks.

Authors:  A Cambon-Thomsen; E Rial-Sebbag; B M Knoppers
Journal:  Eur Respir J       Date:  2007-08       Impact factor: 16.671

Review 9.  Managing incidental findings in human subjects research: analysis and recommendations.

Authors:  Susan M Wolf; Frances P Lawrenz; Charles A Nelson; Jeffrey P Kahn; Mildred K Cho; Ellen Wright Clayton; Joel G Fletcher; Michael K Georgieff; Dale Hammerschmidt; Kathy Hudson; Judy Illes; Vivek Kapur; Moira A Keane; Barbara A Koenig; Bonnie S Leroy; Elizabeth G McFarland; Jordan Paradise; Lisa S Parker; Sharon F Terry; Brian Van Ness; Benjamin S Wilfond
Journal:  J Law Med Ethics       Date:  2008       Impact factor: 1.718

10.  Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays.

Authors:  Nils Homer; Szabolcs Szelinger; Margot Redman; David Duggan; Waibhav Tembe; Jill Muehling; John V Pearson; Dietrich A Stephan; Stanley F Nelson; David W Craig
Journal:  PLoS Genet       Date:  2008-08-29       Impact factor: 5.917

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  6 in total

1.  Why governance? A challenge to good governance of biobanks.

Authors:  Katharine Browne
Journal:  Monash Bioeth Rev       Date:  2015-12

2.  Editorial. Biobanking Eggs and Embryos for Research.

Authors:  Dave Snow; Alana Cattapan
Journal:  Monash Bioeth Rev       Date:  2015-12

3.  Oocyte Biobanks: Old Assumptions and New Challenges.

Authors:  Pamela Tozzo
Journal:  BioTech (Basel)       Date:  2021-02-18

4.  Good practice recommendations for information provision for those involved in reproductive donation.

Authors:  Jackson Kirkman-Brown; Carlos Calhaz-Jorge; Eline A F Dancet; Kersti Lundin; Mariana Martins; Kelly Tilleman; Petra Thorn; Nathalie Vermeulen; Lucy Frith
Journal:  Hum Reprod Open       Date:  2022-02-16

5.  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

6.  Dual consent? Donors' and recipients' views about involvement in decision-making on the use of embryos created by gamete donation in research.

Authors:  I Baía; C de Freitas; C Samorinha; V Provoost; S Silva
Journal:  BMC Med Ethics       Date:  2019-12-02       Impact factor: 2.652

  6 in total

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