Literature DB >> 18237833

Defining the "community" in community consultation for emergency research: findings from the community VOICES study.

Deborah Fish Ragin1, Edmund Ricci, Rosamond Rhodes, Jennifer Holohan, Margaret Smirnoff, Lynne D Richardson.   

Abstract

This article explores the application of the concept "community consultation" in the context of emergency medical research. Emergency medicine researchers are permitted, by the World Medical Association regulations and in the United States by U.S. Federal Regulations, to conduct emergency medical research on individuals with a life-threatening condition without obtaining their consent or that of their surrogates if certain conditions are met. Among these conditions is the requirement that researchers observe a number of special protections for the participants, including "community consultation and notification" prior to the initiation of such studies. The term "community" is not defined clearly and the process for conducting community consultations is not specified in these regulations. This study explores the feasibility of conducting community consultation in the context of emergency medical research by examining: research participant's definitions of community in New York, the factors that help shape their definitions of community and the people they would authorize to render participation decisions on their behalves. Findings from this study suggest that participants' definitions of community vary as a function of the purpose of the definition and the demographics of the respondents. Most significantly, this study reveals that although respondents can identify potential spokespersons for their communities, these community spokespersons were rarely identified as those who should have decision-making authority in medical emergencies. Finally, this article explores the implications of these findings for the definition of community as it applies to community consultation for emergency medical research.

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Year:  2008        PMID: 18237833     DOI: 10.1016/j.socscimed.2007.10.022

Source DB:  PubMed          Journal:  Soc Sci Med        ISSN: 0277-9536            Impact factor:   4.634


  13 in total

1.  A paradigm for understanding trust and mistrust in medical research: The Community VOICES study.

Authors:  M Smirnoff; I Wilets; D F Ragin; R Adams; J Holohan; R Rhodes; G Winkel; E M Ricci; C Clesca; L D Richardson
Journal:  AJOB Empir Bioeth       Date:  2018-02-16

2.  Exception from informed consent for emergency research: consulting the trauma community.

Authors:  Carrie A Sims; Joshua A Isserman; Daniel Holena; Latha Mary Sundaram; Nikolai Tolstoy; Sarah Greer; Seema Sonnad; Jose Pascual; Patrick Reilly
Journal:  J Trauma Acute Care Surg       Date:  2013-01       Impact factor: 3.313

3.  Impact of social stigma on the process of obtaining informed consent for genetic research on podoconiosis: a qualitative study.

Authors:  Fasil Tekola; Susan Bull; Bobbie Farsides; Melanie J Newport; Adebowale Adeyemo; Charles N Rotimi; Gail Davey
Journal:  BMC Med Ethics       Date:  2009-08-22       Impact factor: 2.652

4.  Consulting communities when patients cannot consent: a multicenter study of community consultation for research in emergency settings.

Authors:  Neal W Dickert; Victoria A Mah; Michelle H Biros; Deneil M Harney; Robert Silbergleit; Jeremy Sugarman; Emir Veledar; Kevin P Weinfurt; David W Wright; Rebecca D Pentz
Journal:  Crit Care Med       Date:  2014-02       Impact factor: 7.598

5.  Consent and community engagement in diverse research contexts.

Authors: 
Journal:  J Empir Res Hum Res Ethics       Date:  2013-10       Impact factor: 1.742

6.  Exception From Informed Consent: How IRB Reviewers Assess Community Consultation and Public Disclosure.

Authors:  Makini Chisolm-Straker; Denise Nassisi; Mohamud R Daya; Jennifer N B Cook; Ilene F Wilets; Cindy Clesca; Lynne D Richardson
Journal:  AJOB Empir Bioeth       Date:  2020-09-29

7.  Working with Concepts: The Role of Community in International Collaborative Biomedical Research.

Authors:  V M Marsh; D K Kamuya; M J Parker; C S Molyneux
Journal:  Public Health Ethics       Date:  2011-03-02       Impact factor: 1.940

Review 8.  Meeting unique requirements: Community consultation and public disclosure for research in emergency setting using exception from informed consent.

Authors:  Neal W Dickert; Kathleen Metz; Michael D Fetters; Adrianne N Haggins; Deneil K Harney; Candace D Speight; Robert Silbergleit
Journal:  Acad Emerg Med       Date:  2021-05-26       Impact factor: 5.221

9.  Towards a Science of Community Stakeholder Engagement in Biomedical HIV Prevention Trials: An Embedded Four-Country Case Study.

Authors:  Peter A Newman; Clara Rubincam; Catherine Slack; Zaynab Essack; Venkatesan Chakrapani; Deng-Min Chuang; Suchon Tepjan; Murali Shunmugam; Surachet Roungprakhon; Carmen Logie; Jennifer Koen; Graham Lindegger
Journal:  PLoS One       Date:  2015-08-21       Impact factor: 3.240

10.  Overcoming language barriers in community-based research with refugee and migrant populations: options for using bilingual workers.

Authors:  Susan K Lee; Cheryl R Sulaiman-Hill; Sandra C Thompson
Journal:  BMC Int Health Hum Rights       Date:  2014-04-12
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