Literature DB >> 22382801

Mapping the inputs, analyses, and outputs of biobank research systems to identify sources of incidental findings and individual research results for potential return to participants.

Heather R Bemmels1, Susan M Wolf, Brian Van Ness.   

Abstract

Progress in the debate over returning incidental findings (IFs) and individual research results (IRRs) to research participants who provide specimens and data to biobanks in genetic and genomic research requires a new tool to allow comparison across heterogeneous biobank research systems and in-depth analysis of the sources and types of findings generated for potential return. This article presents a new visual mapping tool to allow systematic and standardized depiction of (i) the specimens initially collected, (ii) the materials and data sets then created, (iii) the analyses then performed, and finally (iv) the genetic and genomic results generated, including potential IFs and IRRs. For any individual biobank research system, this sequence of four maps can be created to anticipate the sources and types of IFs and IRRs to be generated, to plan how to handle them, and then to manage them responsibly over time. We discuss how this four-map tool was created and describe its application to four national biobank systems, thereby demonstrating that this tool can provide a common platform to visualize biobank content, anticipate how IFs and IRRs will arise in a biobank research context, and inform policy development.

Entities:  

Mesh:

Year:  2012        PMID: 22382801      PMCID: PMC3754832          DOI: 10.1038/gim.2011.69

Source DB:  PubMed          Journal:  Genet Med        ISSN: 1098-3600            Impact factor:   8.822


  6 in total

1.  The debate over research on stored biological samples: what do sources think?

Authors:  Dave Wendler; Ezekiel Emanuel
Journal:  Arch Intern Med       Date:  2002-07-08

2.  Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group.

Authors:  Richard R Fabsitz; Amy McGuire; Richard R Sharp; Mona Puggal; Laura M Beskow; Leslie G Biesecker; Ebony Bookman; Wylie Burke; Esteban Gonzalez Burchard; George Church; Ellen Wright Clayton; John H Eckfeldt; Conrad V Fernandez; Rebecca Fisher; Stephanie M Fullerton; Stacey Gabriel; Francine Gachupin; Cynthia James; Gail P Jarvik; Rick Kittles; Jennifer R Leib; Christopher O'Donnell; P Pearl O'Rourke; Laura Lyman Rodriguez; Sheri D Schully; Alan R Shuldiner; Rebecca K F Sze; Joseph V Thakuria; Susan M Wolf; Gregory L Burke
Journal:  Circ Cardiovasc Genet       Date:  2010-12

Review 3.  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

4.  Return of individual research results and incidental findings in the clinical trials cooperative group setting.

Authors:  Michael Ferriere; Brian Van Ness
Journal:  Genet Med       Date:  2012-03-01       Impact factor: 8.822

5.  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

6.  Subjects matter: a survey of public opinions about a large genetic cohort study.

Authors:  David Kaufman; Juli Murphy; Joan Scott; Kathy Hudson
Journal:  Genet Med       Date:  2008-11       Impact factor: 8.822

  6 in total
  4 in total

1.  Returning Results: Let's Be Honest!

Authors:  Bernice S Elger; Eva De Clercq
Journal:  Genet Test Mol Biomarkers       Date:  2017-02-24

2.  Returning a Research Participant's Genomic Results to Relatives: Perspectives from Managers of Two Distinct Research Biobanks.

Authors:  Gloria M Petersen; Brian Van Ness
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

3.  The establishment of research ethics consultation services (RECS): an emerging research resource.

Authors:  Jennifer B McCormick; Richard R Sharp; Abigale L Ottenberg; Carson R Reider; Holly A Taylor; Benjamin S Wilfond
Journal:  Clin Transl Sci       Date:  2012-12-06       Impact factor: 4.689

4.  Newspaper coverage of biobanks.

Authors:  Ubaka Ogbogu; Maeghan Toews; Adam Ollenberger; Pascal Borry; Helene Nobile; Manuela Bergmann; Timothy Caulfield
Journal:  PeerJ       Date:  2014-07-31       Impact factor: 2.984

  4 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.