Improving validity of informed consent for biomedical research in Zambia using a laboratory exposure intervention
| Autor: | Rosemary Banda, Paul Kelly, Ellen Besa, Mumba Chomba, Michelo Simuyandi, Mpala Mwanza Lisulo, Joseph Mumba Zulu, Patrick Kaonga, Caroline C. Chisenga |
|---|---|
| Jazyk: | angličtina |
| Rok vydání: | 2014 |
| Předmět: |
Adult
Male Biomedical Research Research Subjects media_common.quotation_subject Social Sciences lcsh:Medicine Trust Research and Analysis Methods Literacy Young Adult Sociology Informed consent Intervention (counseling) Surveys and Questionnaires Medicine and Health Sciences Medicine Humans Public and Occupational Health lcsh:Science Qualitative Research media_common Medical education Motivation Multidisciplinary Informed Consent business.industry lcsh:R Health services research Focus Groups Middle Aged Qualitative Studies Focus group Socioeconomic Aspects of Health Test (assessment) Clinical trial Health Care Research Design Anthropology Observational Studies Female lcsh:Q business Behavioral and Social Aspects of Health Qualitative research Research Article |
| Zdroj: | PLoS ONE, Vol 9, Iss 9, p e108305 (2014) PLoS ONE |
| ISSN: | 1932-6203 |
| Popis: | BACKGROUND: Complex biomedical research can lead to disquiet in communities with limited exposure to scientific discussions, leading to rumours or to high drop-out rates. We set out to test an intervention designed to address apprehensions commonly encountered in a community where literacy is uncommon, and where complex biomedical research has been conducted for over a decade. We aimed to determine if it could improve the validity of consent. METHODS: Data were collected using focus group discussions, key informant interviews and observations. We designed an intervention that exposed participants to a detailed demonstration of laboratory processes. Each group was interviewed twice in a day, before and after exposure to the intervention in order to assess changes in their views. RESULTS: Factors that motivated people to participate in invasive biomedical research included a desire to stay healthy because of the screening during the recruitment process, regular advice from doctors, free medical services, and trust in the researchers. Inhibiting factors were limited knowledge about samples taken from their bodies during endoscopic procedures, the impact of endoscopy on the function of internal organs, and concerns about the use of biomedical samples. The belief that blood can be used for Satanic practices also created insecurities about drawing of blood samples. Further inhibiting factors included a fear of being labelled as HIV positive if known to consult heath workers repeatedly, and gender inequality. Concerns about the use and storage of blood and tissue samples were overcome by a laboratory exposure intervention. CONCLUSION: Selecting a group of members from target community and engaging them in a laboratory exposure intervention could be a useful tool for enhancing specific aspects of consent for biomedical research. Further work is needed to determine the extent to which improved understanding permeates beyond the immediate group participating in the intervention. |
| Databáze: | OpenAIRE |
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