Understanding of research, genetics and genetic research in a rapid ethical assessment in north west Cameroon

Kengne-Ouafo, Jonas A.; Millard, James; Nji, Theobald Mue; Tantoh, William F; Nyoh, Doris N.; Tendongfor, Nicholas; Enyong, Peter; Newport, Melanie J.; Davey, Gail; Wanji, Samuel

doi:10.1093/inthealth/ihv034

Cited by 13 publications

(9 citation statements)

References 34 publications

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“…In our study, therapeutic misconception was a big deal in rural resident participants, farmers, house wives and religious leaders. Most of the participants understand health research in terms of laboratory investigation to diagnose a disease, while others has explained research relating to land and agricultural farming, which coincides with other study findings[ 11 , 12 , 23 ]. This could be due to the fact that most of the people in Ethiopia are engaged in agriculture and have experience related to agricultural research and best practice expansion among farmers.…”

Section: Discussionsupporting

confidence: 83%

“…The rapid assessment enabled us to modify the information sheet and consent procedure to the local culture and the educational level of the study population. Other researchers have employed the same approach to optimize consent information for research in low income and resource limited settings[ 2 , 8 , 9 , 11 , 12 ].…”

Section: Discussionmentioning

confidence: 99%

“…Based on the study findings, the research team suggested alternative local terminologies that could be used for cancer, explained ways of minimizing confusion between HPV with HIV, justified taking verbal consent over written consent, recommended that data collectors were female, and suggested a way of explaining the main aim of the study. Other researchers have used Rapid Ethical Assessment to inform the consent process for parent studies in similar ways [ 2 , 3 , 8 , 11 , 12 ].…”

Section: Discussionmentioning

confidence: 99%

“…More recently, the Rapid Ethical Assessment approach was used prior to genetic studies in Southern Ethiopia and North West Cameroon, to inform consent form development and the processes of seeking consent from the community and individual participants. Approaching study subjects via locally trusted individuals and preceding individual consent with community sensitization were considered the optimal means of communication [ 2 , 11 , 12 ].…”

Section: Introductionmentioning

confidence: 99%

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Rapid Ethical Assessment on Informed Consent Content and Procedure in Hintalo-Wajirat, Northern Ethiopia: A Qualitative Study

Abay¹,

Addissie²,

Davey³

et al. 2016

PLoS ONE

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BackgroundInformed consent is a key component of bio-medical research involving human participants. However, obtaining informed consent is challenging in low literacy and resource limited settings. Rapid Ethical Assessment (REA) can be used to contextualize and simplify consent information within a given study community. The current study aimed to explore the effects of social, cultural, and religious factors during informed consent process on a proposed HPV-serotype prevalence study.MethodologyA qualitative community-based REA was conducted in Adigudom and Mynebri Kebeles, Northern Ethiopia, from July to August 2013. Data were collected by a multi-disciplinary team using open ended questions concerning informed consent components in relation to the parent study. The team conducted one-to-one In-Depth Interviews (IDI) and Focus Group Discussions (FGDs) with key informants and community members to collect data based on the themes of the study. Tape recorded data were transcribed in Tigrigna and then translated into English. Data were categorized and thematically analyzed using open coding and content analysis based on pre-defined themes.ResultsThe REA study revealed a number of socio-cultural issues relevant to the proposed study. Low community awareness about health research, participant rights and cervical cancer were documented. Giving a vaginal sample for testing was considered to be highly embarrassing, whereas giving a blood sample made participants worry that they might be given a result without the possibility of treatment. Verbal consent was preferred to written consent for the proposed study.ConclusionThis rapid ethical assessment disclosed important socio-cultural issues which might act as barriers to informed decision making. The findings were important for contextual modification of the Information Sheet, and to guide the best consent process for the proposed study. Both are likely to have enabled participants to understand the informed consent better and consequently to comply with the study.

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Section: Discussionsupporting

confidence: 83%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Rapid Ethical Assessment on Informed Consent Content and Procedure in Hintalo-Wajirat, Northern Ethiopia: A Qualitative Study

Abay¹,

Addissie²,

Davey³

et al. 2016

PLoS ONE

Self Cite

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“…Even with the support of medical professionals, the potential for the success of genomic medicine cannot be explored without public participation. There remains a need for a more nuanced understanding of what research participants and their communities understand by medical research in general and genetic research in particular [27], so that information can be tailored and communicated in a way that achieves the goals of obtaining both informed consent and informed refusal.…”

Section: Introductionmentioning

confidence: 99%

Sri Lankan perspective of knowledge and attitude towards genomic medicine and research: protocol for a qualitative study

Chamika¹,

Weiss²,

Jayaweera³

et al. 2018

Preprint

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BackgroundGenomic research allows new discoveries to alleviate human suffering but in turn raises significant ethical issues. In this context, public acceptance and engagement is a major determinant of optimization of genomic research. Therefore, understanding public perspectives related to genomic research is imperative, as it provides a foundation to address ethical issues which may be unknown to researchers and other stakeholders. Although genomic medicine and research has developed in Sri Lanka during the past decade, there is a paucity of understanding about public knowledge and attitudes towards it. MethodsThis research, therefore, aims to explore the understanding, knowledge and attitudes of a Sri Lankan public towards genomic medicine and research, in order to consider more effective and appropriate ways of communicating about the risks and benefits of participating in genomic research. Twenty four participants will be purposively selected from a previously conducted Colombo Twin and Singleton follow-up study (COTASS-2). In-depth qualitative interviews with a semi structured topic guide will be used to collect data, which will be analysed using conventional content analysis.DiscussionThis study is the first of its kind to explore public perspectives towards genomic medicine and research in Sri Lanka. Findings may have implications for producing guidelines for ethical genomic research in Sri Lanka.

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All you Need is Trust? Public Perspectives on Consenting to Participate in Genomic Research in the Sri Lankan District of Colombo

Jayasinghe,

Chamika,

Jayaweera

et al. 2023

ABR

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Engagement with genomic medicine and research has increased globally during the past few decades, including rapid developments in Sri Lanka. Genomic research is carried out in Sri Lanka on a variety of scales and with different aims and perspectives. However, there are concerns about participants' understanding of genomic research, including the validity of informed consent. This article reports a qualitative study aiming to explore the understanding, knowledge, and attitudes of the Sri Lankan public towards genomic medicine and to inform the development of an effective and appropriate process for informed consent in that setting. Purposive sampling was employed. Participants were recruited from a sub-group of the public in Colombo, Sri Lanka who had either consented or refused to donate genetic material for a biobank. Data were collected using face-to-face semi-structured interviews. Interview data were transcribed verbatim and translated into English. Conventional content analysis was used. The analysis developed three key themes: a) ‘Scientific literacy’ describes an apparent lack of scientific knowledge that seems to affect a participant’s ability to understand the research, b) ‘Motivation’ describes narratives about why participants chose (not) to take part in the research, despite not understanding it, and c) ‘Trust’ describes how trust served to mitigate the apparent ethical deficit created by not being fully informed. In this article, we argue that informed trust is likely an acceptable basis for consent, particularly in settings where scientific literacy might be low. However, researchers must work to be worthy of that trust and ensure that misconceptions are actively addressed.

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Understanding of research, genetics and genetic research in a rapid ethical assessment in north west Cameroon

Cited by 13 publications

References 34 publications

Rapid Ethical Assessment on Informed Consent Content and Procedure in Hintalo-Wajirat, Northern Ethiopia: A Qualitative Study

Rapid Ethical Assessment on Informed Consent Content and Procedure in Hintalo-Wajirat, Northern Ethiopia: A Qualitative Study

Sri Lankan perspective of knowledge and attitude towards genomic medicine and research: protocol for a qualitative study

All you Need is Trust? Public Perspectives on Consenting to Participate in Genomic Research in the Sri Lankan District of Colombo

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