Literature DB >> 30994071

Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons.

Patricia A Deverka1, Dierdre Gilmore1, Jennifer Richmond1, Zachary Smith1, Rikki Mangrum1, Barbara A Koenig1, Robert Cook-Deegan1, Angela G Villanueva1, Mary A Majumder1, Amy L McGuire1.   

Abstract

A medical information commons (MIC) is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust.

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Year:  2019        PMID： 30994071      PMCID： PMC6730638          DOI： 10.1177/1073110519840486

Source DB:  PubMed          Journal:  J Law Med Ethics        ISSN： 1073-1105            Impact factor:   1.718


  40 in total

1.  Recruiting for representation in public deliberation on the ethics of biobanks.

Authors:  Holly Longstaff; Michael M Burgess
Journal:  Public Underst Sci       Date:  2010-03

Review 2.  Deliberations about deliberative methods: issues in the design and evaluation of public participation processes.

Authors:  Julia Abelson; Pierre-Gerlier Forest; John Eyles; Patricia Smith; Elisabeth Martin; Francois-Pierre Gauvin
Journal:  Soc Sci Med       Date:  2003-07       Impact factor: 4.634

3.  The charitable trust as a model for genomic biobanks.

Authors:  David E Winickoff; Richard N Winickoff
Journal:  N Engl J Med       Date:  2003-09-18       Impact factor: 91.245

4.  Informed consent and biobanks.

Authors:  Ellen Wright Clayton
Journal:  J Law Med Ethics       Date:  2005       Impact factor: 1.718

5.  Engaging the public on biobanks: outcomes of the BC biobank deliberation.

Authors:  K C O'Doherty; M M Burgess
Journal:  Public Health Genomics       Date:  2008-10-31       Impact factor: 2.000

6.  Public perspectives on informed consent for biobanking.

Authors:  Juli Murphy; Joan Scott; David Kaufman; Gail Geller; Lisa LeRoy; Kathy Hudson
Journal:  Am J Public Health       Date:  2009-10-15       Impact factor: 9.308

7.  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

8.  Attitudes and perceptions of patients towards methods of establishing a DNA biobank.

Authors:  Jill M Pulley; Margaret M Brace; Gordon R Bernard; Dan R Masys
Journal:  Cell Tissue Bank       Date:  2007-10-25       Impact factor: 1.522

9.  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

10.  Public expectations for return of results from large-cohort genetic research.

Authors:  Juli Murphy; Joan Scott; David Kaufman; Gail Geller; Lisa LeRoy; Kathy Hudson
Journal:  Am J Bioeth       Date:  2008-11       Impact factor: 11.229
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  4 in total

Review 1.  Developing Data Sharing Models for Health Research with Real-World Data: A Scoping Review of Patient and Public Preferences.

Authors:  Anna Hermansen; Dean A Regier; Samantha Pollard
Journal:  J Med Syst       Date:  2022-10-22       Impact factor: 4.920

2.  Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons.

Authors:  Amy L McGuire; Mary A Majumder; Angela G Villanueva; Jessica Bardill; Juli M Bollinger; Eric Boerwinkle; Tania Bubela; Patricia A Deverka; Barbara J Evans; Nanibaa' A Garrison; David Glazer; Melissa M Goldstein; Henry T Greely; Scott D Kahn; Bartha M Knoppers; Barbara A Koenig; J Mark Lambright; John E Mattison; Christopher O'Donnell; Arti K Rai; Laura L Rodriguez; Tania Simoncelli; Sharon F Terry; Adrian M Thorogood; Michael S Watson; John T Wilbanks; Robert Cook-Deegan
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718

Review 3.  The involvement of rare disease patient organisations in therapeutic innovation across rare paediatric neurological conditions: a narrative review.

Authors:  Christina Q Nguyen; Kristine Alba-Concepcion; Elizabeth E Palmer; Jackie L Scully; Nicole Millis; Michelle A Farrar
Journal:  Orphanet J Rare Dis       Date:  2022-04-18       Impact factor: 4.303

4.  Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries.

Authors:  Richard Milne; Katherine I Morley; Mohamed A Almarri; Shamim Anwer; Jerome Atutornu; Elena E Baranova; Paul Bevan; Maria Cerezo; Yali Cong; Alessia Costa; Christine Critchley; Josepine Fernow; Peter Goodhand; Qurratulain Hasan; Aiko Hibino; Gry Houeland; Heidi C Howard; S Zakir Hussain; Charlotta Ingvoldstad Malmgren; Vera L Izhevskaya; Aleksandra Jędrzejak; Cao Jinhong; Megumi Kimura; Erika Kleiderman; Brandi Leach; Keying Liu; Deborah Mascalzoni; Álvaro Mendes; Jusaku Minari; Dianne Nicol; Emilia Niemiec; Christine Patch; Jack Pollard; Barbara Prainsack; Marie Rivière; Lauren Robarts; Jonathan Roberts; Virginia Romano; Haytham A Sheerah; James Smith; Alexandra Soulier; Claire Steed; Vigdis Stefànsdóttir; Cornelia Tandre; Adrian Thorogood; Torsten H Voigt; Nan Wang; Anne V West; Go Yoshizawa; Anna Middleton
Journal:  Genome Med       Date:  2021-05-25       Impact factor: 11.117
  4 in total

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