Literature DB >> 21307299

Power to the people: participant ownership of clinical trial data.

Sharon F Terry1, Patrick F Terry.   

Abstract

Participation in clinical trials is dismally low. In this age of electronic sharing of information of all sorts, trial participants can easily share clinical trial data. The benefits of participant ownership and sharing of trial data appear to outweigh the risks. Thus, the time has come to crowd-source data for diagnostic and therapy development.

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Year:  2011        PMID： 21307299     DOI： 10.1126/scitranslmed.3001857

Source DB:  PubMed          Journal:  Sci Transl Med        ISSN： 1946-6234            Impact factor:   17.956


  21 in total

1.  Realizing Our Potential in Biobanking: Disease Advocacy Organizations Enliven Translational Research.

Authors:  Kelly A Edwards; Sharon F Terry; Dana Gold; Elizabeth J Horn; Mary Schwartz; Molly Stuart; Suzanne D Vernon
Journal:  Biopreserv Biobank       Date:  2016-04-08       Impact factor: 2.300

2.  Ethical issues in health research with novel online sources.

Authors:  Effy Vayena; Anna Mastroianni; Jeffrey Kahn
Journal:  Am J Public Health       Date:  2012-10-18       Impact factor: 9.308

Review 3.  From patients to partners: participant-centric initiatives in biomedical research.

Authors:  Jane Kaye; Liam Curren; Nick Anderson; Kelly Edwards; Stephanie M Fullerton; Nadja Kanellopoulou; David Lund; Daniel G MacArthur; Deborah Mascalzoni; James Shepherd; Patrick L Taylor; Sharon F Terry; Stefan F Winter
Journal:  Nat Rev Genet       Date:  2012-04-03       Impact factor: 53.242

4.  Reporting actionable research results: shared secrets can save lives.

Authors:  Lawrence E Hunter; Christian Hopfer; Sharon F Terry; Marilyn E Coors
Journal:  Sci Transl Med       Date:  2012-07-18       Impact factor: 17.956

5.  You never call, you never write: why return of 'omic' results to research participants is both a good idea and a moral imperative.

Authors:  Misha Angrist
Journal:  Per Med       Date:  2011-11       Impact factor: 2.512

6.  Learning from hackers: open-source clinical trials.

Authors:  Adam G Dunn; Richard O Day; Kenneth D Mandl; Enrico Coiera
Journal:  Sci Transl Med       Date:  2012-05-02       Impact factor: 17.956

7.  Clinical Research Environment in India: Challenges and Proposed Solutions.

Authors:  Tal Burt; Pooja Sharma; Savita Dhillon; Mukul Manchanda; Sanjay Mittal; Naresh Trehan
Journal:  J Clin Res Bioeth       Date:  2014-11-01

Review 8.  Routes for breaching and protecting genetic privacy.

Authors:  Yaniv Erlich; Arvind Narayanan
Journal:  Nat Rev Genet       Date:  2014-05-08       Impact factor: 53.242

9.  Community perspectives on public health biobanking: an analysis of community meetings on the Michigan BioTrust for Health.

Authors:  Daniel B Thiel; Tevah Platt; Jodyn Platt; Susan B King; Sharon L R Kardia
Journal:  J Community Genet       Date:  2013-07-27

10.  Adapting standards: ethical oversight of participant-led health research.

Authors:  Effy Vayena; John Tasioulas
Journal:  PLoS Med       Date:  2013-03-12       Impact factor: 11.069
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