Literature DB >> 26711425

Citizen Science on Your Smartphone: An ELSI Research Agenda.

Mark A Rothstein1, John T Wilbanks2, Kyle B Brothers3.   

Abstract

The prospect of newly-emerging, technology-enabled, unregulated citizen science health research poses a substantial challenge for traditional research ethics. Unquestionably, a significant amount of research ethics study is needed to prepare for the inevitable, widespread introduction of citizen science health research. Using the case study of mobile health (mHealth) research, this article provides an ethical, legal, and social implications (ELSI) research agenda for citizen science health research conducted outside conventional research institutions. The issues for detailed analysis include the role of IRBs, recruitment, inclusion and exclusion criteria, informed consent, confidentiality and security, vulnerable participants, incidental findings, and publication and data sharing.
© 2015 American Society of Law, Medicine & Ethics, Inc.

Entities:  

Mesh:

Year:  2015        PMID: 26711425     DOI: 10.1111/jlme.12327

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


  13 in total

1.  Leveraging mobile health applications for biomedical research and citizen science: a scoping review.

Authors:  Hannah Schmitz; Carol L Howe; David G Armstrong; Vignesh Subbian
Journal:  J Am Med Inform Assoc       Date:  2018-12-01       Impact factor: 4.497

2.  Ethical Considerations in the Conduct of Unregulated mHealth Research: Expert Perspectives.

Authors:  Catherine M Hammack-Aviran; Kathleen M Brelsford; Laura M Beskow
Journal:  J Law Med Ethics       Date:  2020-03       Impact factor: 1.718

3.  Core values of genomic citizen science: results from a qualitative interview study.

Authors:  Christi J Guerrini; Meredith Trejo; Isabel Canfield; Amy L McGuire
Journal:  Biosocieties       Date:  2020-09-28

4.  "A cohort of pirate ships": biomedical citizen scientists' attitudes toward ethical oversight.

Authors:  Meredith Trejo; Isabel Canfield; Whitney Bash Brooks; Alex Pearlman; Christi J Guerrini
Journal:  Citiz Sci       Date:  2021-05-20

5.  Biomedical Citizen Science or Something Else? Reflections on Terms and Definitions.

Authors:  Christi J Guerrini; Anna Wexler; Patricia J Zettler; Amy L McGuire
Journal:  Am J Bioeth       Date:  2019-08       Impact factor: 11.229

Review 6.  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 7.  Application of Ethics for Providing Telemedicine Services and Information Technology.

Authors:  Mostafa Langarizadeh; Fatemeh Moghbeli; Ali Aliabadi
Journal:  Med Arch       Date:  2017-10

8.  Research data management in health and biomedical citizen science: practices and prospects.

Authors:  Ann Borda; Kathleen Gray; Yuqing Fu
Journal:  JAMIA Open       Date:  2019-12-09

9.  Approaches to governance of participant-led research: a qualitative case study.

Authors:  Azure Dominique Grant; Gary Isaac Wolf; Camille Nebeker
Journal:  BMJ Open       Date:  2019-04-02       Impact factor: 2.692

Review 10.  The Precision Medicine Initiative's All of Us Research Program: an agenda for research on its ethical, legal, and social issues.

Authors:  Pamela L Sankar; Lisa S Parker
Journal:  Genet Med       Date:  2016-12-08       Impact factor: 8.822

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