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Examining the Notion of Informed Consent and Lessons Learned for Increasing Inclusion Among Marginalised Research Groups

Examining the Notion of Informed Consent and Lessons Learned for Increasing Inclusion Among Marginalised Research Groups
Examining the Notion of Informed Consent and Lessons Learned for Increasing Inclusion Among Marginalised Research Groups
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.
Research methods, research ethics
978-0-415-53107-8
217-227
Routledge
Foster, Nena
d002037d-e2fe-4c39-a1fd-11f81e599f86
Freeman, Emily K.
f9fc3eba-7d6b-4c79-9b43-ae8b2a98b8ff
Taket, Ann
Crisp, Beth R.
Graham, Melissa
Hanna, Lisa
Goldingay, Sophie
Wilson, Linda
Foster, Nena
d002037d-e2fe-4c39-a1fd-11f81e599f86
Freeman, Emily K.
f9fc3eba-7d6b-4c79-9b43-ae8b2a98b8ff
Taket, Ann
Crisp, Beth R.
Graham, Melissa
Hanna, Lisa
Goldingay, Sophie
Wilson, Linda

Foster, Nena and Freeman, Emily K. (2013) Examining the Notion of Informed Consent and Lessons Learned for Increasing Inclusion Among Marginalised Research Groups. In, Taket, Ann, Crisp, Beth R., Graham, Melissa, Hanna, Lisa, Goldingay, Sophie and Wilson, Linda (eds.) Practising Social Inclusion. Abingdon, GB. Routledge, pp. 217-227.

Record type: Book Section

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.

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More information

Published date: 26 June 2013
Keywords: Research methods, research ethics
Organisations: Gerontology

Identifiers

Local EPrints ID: 348717
URI: http://eprints.soton.ac.uk/id/eprint/348717
ISBN: 978-0-415-53107-8
PURE UUID: eb4ef927-1498-4012-8ebd-80a2c10b6269

Catalogue record

Date deposited: 18 Feb 2013 15:18
Last modified: 22 Jul 2022 18:23

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Contributors

Author: Nena Foster
Author: Emily K. Freeman
Editor: Ann Taket
Editor: Beth R. Crisp
Editor: Melissa Graham
Editor: Lisa Hanna
Editor: Sophie Goldingay
Editor: Linda Wilson

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