Literature DB >> 21307300

Electronic consent channels: preserving patient privacy without handcuffing researchers.

Robert H Shelton1.   

Abstract

Advances in health information technology and electronic medical records have the tremendous potential to accelerate translational and clinical research. However, privacy concerns threaten to be a rate-limiting factor. By recognizing and responding to patient privacy concerns, policy-makers, researchers, and information technology leaders have the opportunity to transform trial recruitment and make it safer to electronically locate and convey sensitive health information.

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Year:  2011        PMID: 21307300     DOI: 10.1126/scitranslmed.3002037

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


  14 in total

1.  Developing predictive molecular maps of human disease through community-based modeling.

Authors:  Jonathan M J Derry; Lara M Mangravite; Christine Suver; Matthew D Furia; David Henderson; Xavier Schildwachter; Brian Bot; Jonathan Izant; Solveig K Sieberts; Michael R Kellen; Stephen H Friend
Journal:  Nat Genet       Date:  2012-01-27       Impact factor: 38.330

Review 2.  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

3.  Testing an online, dynamic consent portal for large population biobank research.

Authors:  Daniel B Thiel; Jodyn Platt; Tevah Platt; Susan B King; Nicole Fisher; Robert Shelton; Sharon L R Kardia
Journal:  Public Health Genomics       Date:  2014-10-30       Impact factor: 2.000

4.  Electronic Informed Consent to Facilitate Recruitment of Pregnant Women Into Research.

Authors:  Julia C Phillippi; Jennifer K Doersam; Jeremy L Neal; Christianne L Roumie
Journal:  J Obstet Gynecol Neonatal Nurs       Date:  2018-07

Review 5.  Characterizing the Biomedical Data-Sharing Landscape.

Authors:  Angela G Villanueva; Robert Cook-Deegan; Barbara A Koenig; Patricia A Deverka; Erika Versalovic; Amy L McGuire; Mary A Majumder
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718

Review 6.  Mitochondrial Disease Sequence Data Resource (MSeqDR): a global grass-roots consortium to facilitate deposition, curation, annotation, and integrated analysis of genomic data for the mitochondrial disease clinical and research communities.

Authors:  Marni J Falk; Lishuang Shen; Michael Gonzalez; Jeremy Leipzig; Marie T Lott; Alphons P M Stassen; Maria Angela Diroma; Daniel Navarro-Gomez; Philip Yeske; Renkui Bai; Richard G Boles; Virginia Brilhante; David Ralph; Jeana T DaRe; Robert Shelton; Sharon F Terry; Zhe Zhang; William C Copeland; Mannis van Oven; Holger Prokisch; Douglas C Wallace; Marcella Attimonelli; Danuta Krotoski; Stephan Zuchner; Xiaowu Gai
Journal:  Mol Genet Metab       Date:  2014-12-04       Impact factor: 4.797

7.  Citizens, Research Ethics Committee Members and Researchers' Attitude Toward Information and Consent for the Secondary Use of Health Data: Implications for Research Within Learning Health Systems.

Authors:  Annabelle Cumyn; Roxanne Dault; Adrien Barton; Anne-Marie Cloutier; Jean-François Ethier
Journal:  J Empir Res Hum Res Ethics       Date:  2021-03-12       Impact factor: 1.742

8.  Ancillary study management systems: a review of needs.

Authors:  Elizabeth K Nelson; Britt Piehler; Adam Rauch; Sarah Ramsay; Drienna Holman; Smita Asare; Adam Asare; Mark Igra
Journal:  BMC Med Inform Decis Mak       Date:  2013-01-07       Impact factor: 2.796

9.  Ethical issues in biomedical research using electronic health records: a systematic review.

Authors:  Jan Piasecki; Ewa Walkiewicz-Żarek; Justyna Figas-Skrzypulec; Anna Kordecka; Vilius Dranseika
Journal:  Med Health Care Philos       Date:  2021-06-19

Review 10.  Lessons from HeLa Cells: The Ethics and Policy of Biospecimens.

Authors:  Laura M Beskow
Journal:  Annu Rev Genomics Hum Genet       Date:  2016-03-03       Impact factor: 8.929

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