Literature DB >> 25581047

EngageUC: Developing an Efficient and Ethical Approach to Biobanking Research at the University of California.

Sarah B Garrett1, Barbara A Koenig2, Arleen Brown3, Jen R Hult1,4, Elizabeth A Boyd5, Sarah Dry6, Daniel Dohan1.   

Abstract

Biorepositories, or biobanks, provide researchers with access to biological samples and associated data in support of translational research. Efficient operation and ethical stewardship of biobanks involves coordinated efforts among multiple stakeholders including researchers who manage and use the repository, institutional officials charged with its oversight, and patients and volunteers who contribute samples and data. As advancements in translational research increasingly involve more data derived from larger numbers of diverse samples, the size and governance challenges facing biorepositories have grown. We describe an approach to developing efficient and ethical biobank governance that includes all major stakeholders. This model provides a pathway for addressing the technical and ethical challenges that must be resolved to ensure biorepositories continue to support translational research.
© 2015 Wiley Periodicals, Inc.

Entities:  

Keywords:  biorepositories; patients; population; translational research

Mesh:

Year:  2015        PMID: 25581047      PMCID: PMC4499012          DOI: 10.1111/cts.12259

Source DB:  PubMed          Journal:  Clin Transl Sci        ISSN: 1752-8054            Impact factor:   4.689


  27 in total

1.  An Australian approach to the policy translation of deliberated citizen perspectives on biobanking.

Authors:  Caron Molster; Susannah Maxwell; Leanne Youngs; Ayla Potts; Gaenor Kyne; Fiona Hope; Hugh Dawkins; Peter O'Leary
Journal:  Public Health Genomics       Date:  2011-12-14       Impact factor: 2.000

2.  Structuring public engagement for effective input in policy development on human tissue biobanking.

Authors:  Kieran C O'Doherty; A Hawkins
Journal:  Public Health Genomics       Date:  2010-04-15       Impact factor: 2.000

3.  Informed consent in biobank research: a deliberative approach to the debate.

Authors:  David M Secko; Nina Preto; Simon Niemeyer; Michael M Burgess
Journal:  Soc Sci Med       Date:  2008-12-16       Impact factor: 4.634

Review 4.  Informed consent in genomics and genetic research.

Authors:  Amy L McGuire; Laura M Beskow
Journal:  Annu Rev Genomics Hum Genet       Date:  2010       Impact factor: 8.929

Review 5.  Identifiability in biobanks: models, measures, and mitigation strategies.

Authors:  Bradley Malin; Grigorios Loukides; Kathleen Benitez; Ellen Wright Clayton
Journal:  Hum Genet       Date:  2011-07-08       Impact factor: 4.132

6.  Balancing the risks and benefits of genomic data sharing: genome research participants' perspectives.

Authors:  J M Oliver; M J Slashinski; T Wang; P A Kelly; S G Hilsenbeck; A L McGuire
Journal:  Public Health Genomics       Date:  2011-12-30       Impact factor: 2.000

7.  Using computer agents to explain medical documents to patients with low health literacy.

Authors:  Timothy W Bickmore; Laura M Pfeifer; Michael K Paasche-Orlow
Journal:  Patient Educ Couns       Date:  2009-03-17

8.  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

9.  Confronting real time ethical, legal, and social issues in the Electronic Medical Records and Genomics (eMERGE) Consortium.

Authors:  Ellen Wright Clayton; Maureen Smith; Stephanie M Fullerton; Wylie Burke; Catherine A McCarty; Barbara A Koenig; Amy L McGuire; Laura M Beskow; Lynn Dressler; Amy A Lemke; Erin M Ramos; Laura Lyman Rodriguez
Journal:  Genet Med       Date:  2010-10       Impact factor: 8.822

10.  Return of individual research results from genome-wide association studies: experience of the Electronic Medical Records and Genomics (eMERGE) Network.

Authors:  Stephanie M Fullerton; Wendy A Wolf; Kyle B Brothers; Ellen Wright Clayton; Dana C Crawford; Joshua C Denny; Philip Greenland; Barbara A Koenig; Kathleen A Leppig; Noralane M Lindor; Catherine A McCarty; Amy L McGuire; Eugenia R McPeek Hinz; Daniel B Mirel; Erin M Ramos; Marylyn D Ritchie; Maureen E Smith; Carol J Waudby; Wylie Burke; Gail P Jarvik
Journal:  Genet Med       Date:  2012-02-23       Impact factor: 8.822

View more
  7 in total

1.  Engaging Diverse Stakeholders to Inform Biobank Governance.

Authors:  Marie Murphy; Sarah B Garrett; Elizabeth Boyd; Sarah Dry; Daniel Dohan
Journal:  Biopreserv Biobank       Date:  2017-02-02       Impact factor: 2.300

Review 2.  Returning Results in Biobank Research: Global Trends and Solutions.

Authors:  Eva De Clercq; Jane Kaye; Susan M Wolf; Barbara A Koenig; Bernice S Elger
Journal:  Genet Test Mol Biomarkers       Date:  2017-02-01

3.  Linking Broad Consent to Biobank Governance: Support From a Deliberative Public Engagement in California.

Authors:  Sarah B Garrett; Daniel Dohan; Barbara A Koenig
Journal:  Am J Bioeth       Date:  2015       Impact factor: 11.229

4.  Standard Versus Simplified Consent Materials for Biobank Participation: Differences in Patient Knowledge and Trial Accrual.

Authors:  Sarah B Garrett; Marie Murphy; James Wiley; Daniel Dohan
Journal:  J Empir Res Hum Res Ethics       Date:  2017-10-16       Impact factor: 1.978

5.  Community recommendations on biobank governance: Results from a deliberative community engagement in California.

Authors:  Sarah M Dry; Sarah B Garrett; Barbara A Koenig; Arleen F Brown; Michael M Burgess; Jen R Hult; Holly Longstaff; Elizabeth S Wilcox; Sigrid Karina Madrigal Contreras; Arturo Martinez; Elizabeth A Boyd; Daniel Dohan
Journal:  PLoS One       Date:  2017-02-24       Impact factor: 3.240

6.  The ECOUTER methodology for stakeholder engagement in translational research.

Authors:  Madeleine J Murtagh; Joel T Minion; Andrew Turner; Rebecca C Wilson; Mwenza Blell; Cynthia Ochieng; Barnaby Murtagh; Stephanie Roberts; Oliver W Butters; Paul R Burton
Journal:  BMC Med Ethics       Date:  2017-04-04       Impact factor: 2.652

7.  Rules of engagement: perspectives on stakeholder engagement for genomic biobanking research in South Africa.

Authors:  Ciara Staunton; Paulina Tindana; Melany Hendricks; Keymanthri Moodley
Journal:  BMC Med Ethics       Date:  2018-02-27       Impact factor: 2.652

  7 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.