Literature DB >> 22378133

Tailoring information provision and consent processes to research contexts: the value of rapid assessments.

Susan Bull1, Bobbie Farsides, Fasil Tekola Ayele.   

Abstract

Guidance requires that consent processes for research be appropriately tailored to their cultural context. This paper discusses the use of rapid assessments to identify cultural and ethical issues arising when explaining research in studies in The Gambia and Ethiopia. The assessments provided insights into appropriate ways of providing information to minimize the risk of stigmatizing vulnerable research populations; research participants' views about the most important information to provide about research and their understandings of research; and perceived constraints upon reaching voluntary decisions about participation. These insights demonstrate that rapid assessments are a relatively quick and inexpensive intervention that can provide valuable information to assist in the tailoring of information provision and consent processes to research context while maintaining and enhancing participants' fundamental protections.

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Year:  2012        PMID: 22378133      PMCID: PMC3427649          DOI: 10.1525/jer.2012.7.1.37

Source DB:  PubMed          Journal:  J Empir Res Hum Res Ethics        ISSN: 1556-2646            Impact factor:   1.742


  56 in total

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4.  Where techno-science meets poverty: medical research and the economy of blood in The Gambia, West Africa.

Authors:  James Fairhead; Melissa Leach; Mary Small
Journal:  Soc Sci Med       Date:  2006-04-21       Impact factor: 4.634

5.  The informed consent process in a rural African setting: a case study of the Kassena-Nankana district of Northern Ghana.

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Journal:  IRB       Date:  2006 May-Jun

6.  Informed consent and participant perceptions of influenza vaccine trials in South Africa.

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Journal:  J Med Ethics       Date:  2005-12       Impact factor: 2.903

7.  'Even if they ask you to stand by a tree all day, you will have to do it (laughter)...!': community voices on the notion and practice of informed consent for biomedical research in developing countries.

Authors:  C S Molyneux; D R Wassenaar; N Peshu; K Marsh
Journal:  Soc Sci Med       Date:  2005-07       Impact factor: 4.634

8.  Written parental consent in school-based HIV/AIDS prevention research.

Authors:  Catherine Mathews; Sally J Guttmacher; Alan J Flisher; Yolisa Mtshizana; Andiswa Hani; Merrick Zwarenstein
Journal:  Am J Public Health       Date:  2005-07       Impact factor: 9.308

9.  Parental attitudes towards and perceptions of their children's participation in clinical research: a developing-country perspective.

Authors:  Mona Nabulsi; Yvette Khalil; Jihad Makhoul
Journal:  J Med Ethics       Date:  2010-08-16       Impact factor: 2.903

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Authors:  Ogenna Manafa; Graham Lindegger; Carel Ijsselmuiden
Journal:  Indian J Med Ethics       Date:  2007 Jan-Mar
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  23 in total

1.  Why personalized medicine will fail if we stay the course.

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2.  A pilot study of simple interventions to improve informed consent in clinical research: feasibility, approach, and results.

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Journal:  Clin Trials       Date:  2014-12-04       Impact factor: 2.486

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4.  Consent and community engagement in diverse research contexts.

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

5.  Vulnerability, Agency, and the Research Encounter: Family Members' Experiences and Perceptions of Participating in an Observational Clinical Study in Kenya.

Authors:  Scholastica M Zakayo; Mary N Kimani; Gladys Sanga; Rita Njeru; Anderson Charo; James A Berkley; Judd L Walson; Maureen Kelley; Vicki Marsh; Sassy Molyneux
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6.  Understandings of genomic research in developing countries: a qualitative study of the views of MalariaGEN participants in Mali.

Authors:  Karim Traore; Susan Bull; Alassane Niare; Salimata Konate; Mahamadou A Thera; Dominic Kwiatkowski; Michael Parker; Ogobara K Doumbo
Journal:  BMC Med Ethics       Date:  2015-06-16       Impact factor: 2.652

7.  Seeking consent to genetic and genomic research in a rural Ghanaian setting: a qualitative study of the MalariaGEN experience.

Authors:  Paulina Tindana; Susan Bull; Lucas Amenga-Etego; Jantina de Vries; Raymond Aborigo; Kwadwo Koram; Dominic Kwiatkowski; Michael Parker
Journal:  BMC Med Ethics       Date:  2012-07-02       Impact factor: 2.652

Review 8.  Volunteer experiences and perceptions of the informed consent process: Lessons from two HIV clinical trials in Uganda.

Authors:  Agnes Ssali; Fiona Poland; Janet Seeley
Journal:  BMC Med Ethics       Date:  2015-12-03       Impact factor: 2.652

9.  Voluntary participation and comprehension of informed consent in a genetic epidemiological study of breast cancer in Nigeria.

Authors:  Patricia A Marshall; Clement A Adebamowo; Adebowale A Adeyemo; Temidayo O Ogundiran; Teri Strenski; Jie Zhou; Charles N Rotimi
Journal:  BMC Med Ethics       Date:  2014-05-13       Impact factor: 2.652

10.  A mixed-methods study on perceptions towards use of Rapid Ethical Assessment to improve informed consent processes for health research in a low-income setting.

Authors:  Adamu Addissie; Gail Davey; Melanie J Newport; Thomas Addissie; Hayley MacGregor; Yeweyenhareg Feleke; Bobbie Farsides
Journal:  BMC Med Ethics       Date:  2014-05-02       Impact factor: 2.652

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