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

Kengne-Ouafo JA1, Millard JD2, Nji TM3, Tantoh WF4, Nyoh DN5, Tendongfor N1, Enyong PA1, Newport MJ6, Davey G6, Wanji S1.

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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.