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

Kengne-Ouafo, Jonas A, Millard, James D, Nji, Theobald M, Tantoh, William F, Nyoh, Doris N, Tendongfor, Nicholas, Enyong, Peter A, Newport, Melanie J, Davey, Gail and Wanji, Samuel (2015) Understanding of research, genetics and genetic research in a rapid ethical assessment in north west Cameroon. International health, 7 (4). ISSN 1876-3405

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Abstract

BACKGROUND

There is limited assessment of whether research participants in low-income settings are afforded a full understanding of the meaning of medical research. There may also be particular issues with the understanding of genetic research. We used a rapid ethical assessment methodology to explore perceptions surrounding the meaning of research, genetics and genetic research in north west Cameroon.

METHODS

Eleven focus group discussions (including 107 adults) and 72 in-depth interviews were conducted with various stakeholders in two health districts in north west Cameroon between February and April 2012.

RESULTS

Most participants appreciated the role of research in generating knowledge and identified a difference between research and healthcare but gave varied explanations as to this difference. Most participants' understanding of genetics was limited to concepts of hereditary, with potential benefits limited to the level of the individual or family. Explanations based on supernatural beliefs were identified as a special issue but participants tended not to identify any other special risks with genetic research.

CONCLUSION

We demonstrated a variable level of understanding of research, genetics and genetic research, with implications for those carrying out genetic research in this and other low resource settings. Our study highlights the utility of rapid ethical assessment prior to complex or sensitive research.

Item Type: Article
Schools and Departments: Brighton and Sussex Medical School > Global Health and Infection
Subjects: R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine > RA0773 Personal health and hygiene Including clothing, bathing, exercise, travel, nutrition, sleep, sex hygiene
Depositing User: Ellen Thomas
Date Deposited: 18 Aug 2015 11:53
Last Modified: 04 Aug 2017 03:10
URI: http://sro.sussex.ac.uk/id/eprint/56128

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