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BMJ 2005;331:779 (1 October), doi:10.1136/bmj.331.7519.779-a
EDITORBreast cancer is a rapidly emerging disease in Africa.1 It has similar implications for African women as HIV, but it receives little attention in terms of publicity, funding (both overseas and internally), and local research. Affected women are young and poor and present with late stage disease. Five year survival is 5-15% compared with over 60% in developed countries.2 3 The disease is controlled by mutilating surgery. Without prosthetic support, the patient rapidly loses self esteem and may die young.
We encountered many challenges with research governance in studying the pattern of occurrence and molecular genetic variations of breast cancer in Nigeria and the UK.4 Ethics approval in Nigeria is not well structured. Existing consent forms are generic and do not cover special collaborations such as genetic studies. Tracing patients to request consent for the use of archive material is difficult. Post and telecommunications do not always work. Record keeping and data retrieval have deficiencies. Lack of accurate, supporting databases such as cancer registries,5 population census, and demography make interpretation of research information difficult.
We collected data from multiple sources to bridge the gap in supporting databases.4 Couriers were used for transporting appropriately package samples as well as messages. To insist that the same ethical requirements of developed countries are to be fulfilled by African collaborators may be impractical. Often, consideration has to be made for the many peculiar situations that exist while still protecting the "best interests" of patients. The safeguard is to plan research that allows for all of these problems rather than to encounter them midway through.
Isaac D Gukas, lecturer
i.gukas{at}uea.ac.uk
School of Medicine, Health Policy and Practice, University of East Anglia, Norwich NR4 7TJ
Barbara A Jennings, senior lecturer, Samuel J Leinster, professor of medical education, Ian Harvey, professor of epidemiology
School of Medicine, Health Policy and Practice, University of East Anglia, Norwich NR4 7TJ