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Examining the notion of informed consent and lessons learned for increasing inclusion among marginalised research groups

Foster, Nena and Freeman, Emily (2013) Examining the notion of informed consent and lessons learned for increasing inclusion among marginalised research groups. In: Taket, Ann, Crisp, Beth, Graham, Melissa, Hanna, Lisa, Goldingay, Sophie and Wilson, Linda, (eds.) Practising social inclusion. Routledge, Abingdon, GB, pp. 217-227. ISBN 9780415531078

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Abstract

This chapter examines some of the barriers to obtaining informed consent to participate in research studies from those who are deemed vulnerable, disadvantaged, marginalised and underrepresented in research. First, the chapter examines the underlying principles of informed consent, before examining the challenges presented by formalised and regulated informed consent procedures in contexts in which data collection processes are fluid and potential research participants have differing needs. Finally, the chapter examines the notions of trust and researcher responsibility and their significance for negotiating and maintaining a non-formalised form of consent. We argue that these procedures serve to enhance, rather than diminish, participant autonomy. In order to illustrate the challenges and solutions of obtaining informed consent, we present research carried out with a group of predominately African migrants aged 50 and older, and living with HIV in a socio-economically disadvantaged area of East London, UK. We examine the challenges presented by utilising standardised, informed consent procedures, by which respondents to an anonymous questionnaire and participants in a series of focus group discussions were required to give written and signed consent. The case study illustrates how underlying assumptions about the nature and acceptability of approaches to verifying consent for research participation can exclude or include participation from populations who are typically excluded for research. Here, adults with uncertain immigration status, poor literacy, poor English language, poor mental and physical health, felt stigmatised or suspicious of the consenting requirements. Drawing on our experiences, we argue that the model of written informed consent, in some cases can and where possible, should be exchanged for other forms of informed consent such as implied consent in order to include groups that we often know the least about, such as marginalised groups.

Item Type: Book Section
Official URL: http://www.routledge.com/books/details/97804155310...
Additional Information: © 2013 Routledge
Divisions: Social Policy
LSE Health
Subjects: H Social Sciences > H Social Sciences (General)
H Social Sciences > HM Sociology
H Social Sciences > HT Communities. Classes. Races
R Medicine > RA Public aspects of medicine
Sets: Departments > Social Policy
Research centres and groups > LSE Health
Date Deposited: 07 Apr 2014 15:50
Last Modified: 20 Feb 2019 06:09
Funders: University of East London
URI: http://eprints.lse.ac.uk/id/eprint/56327

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