Women constitute a disproportionate share of the poor and the illiterate in developing countries, particularly in Africa. Dr. Adeyinka Falusi reports that African women are especially in danger of being victimized by unethical medical researchers and that, in the male-dominated societies of Africa, they have very little control over their personal healthcare.

The burden of disease, including malaria, sickle cell anaemia, tuberculosis and HIV/AIDS, weighs heavily on developing countries, particularly in Africa, where these illnesses are most prevalent. In more ways than one, the impact of these diseases has been disproportionately borne by women. Research is, of course, essential to solving these healthcare problems. Clinical trials, and genetic research in particular, are the key to eliminating disease worldwide. Such research, however, must be conducted according to ethical guidelines.

UNETHICAL RESEARCH IN AFRICA

Despite the extended codes of ethics formulated by organizations such as the Council for International Organisations of Medical Sciences (CIOMS)(Ref), the World Health Organisation (WHO) (Ref), the Helsinki Conference(Ref) and many others, unethical conduct persists in research performed in Africa. African women are particularly vulnerable. Guideline 10 of CIOMS addresses the issue of research in communities with limited resources. We must ask ourselves if research participants, in these communities, particularly women with the lowest literacy levels, are sufficiently educated to really understand the details of the studies in which they participate. Guideline 1 of CIOMS touches on equitable distribution of burdens and benefits while Guideline 4 addresses issues of individual consent. These rules give rise to more questions. Is there skepticism concerning documentation in African countries? Africans have a hierarchical social organization. Who gives consent? The village chief, the husbands or the individual women themselves?

AFRICAN WOMEN LACK THE POWER TO MAKE THEIR OWN DECISIONS

In many African societies women are seen and not heard. Women are known to constitute the largest population group with the lowest literacy rate, the lowest enrolment rate and the highest attrition rate in schools and colleges in Africa(Ref). Many women have no right to make decisions, even on matters that concern their own personal health. Such a state of affairs is perpetuated partly by women themselves, as they view their role as subordinate to men. Women in Africa are limited by extreme poverty that is often the result of cultural and religious factors, such as inheritance laws, which give men overwhelming economic power. Women in Africa are not empowered to make even simple decisions about their lives without the consent of their husbands. Decision-making on healthcare matters is male-dominated, whether at the household, national or international levels.

MEDICINE BY MEN AND FOR MEN

Positions of power have always been occupied by men. Men have set research agendas, chosen funding priorities, written laws and public policy, and determined which questions need attention. Yet their decisions affect women as well. Even the current UNESCO International Bioethics Committee (IBC), for example, which was instituted to set standards to enhance the health and well being of all, has an almost exclusively male membership(Ref). Women’s perspectives and life experiences are not appropriately represented or reflected in healthcare research and in the current bioethics debate. Women cannot expect that men will adequately represent women’s issues and perspectives.

Historically, there has always been a presumption that research done by or with men applied to everyone, including women. Hence, the limited participation of females in certain fields of research. Evidence-based medicine shows us that the impact of healthcare research on women’s lives is different from its impact on the lives of men. This is evidenced by coronary artery disease and asthma, where gender differences in prognosis are well known. With the completion of the genome project, we also know that there are genetic and gender influences on both the expression of disease and the response to therapy. As well, the ethical implications for women of new reproductive technology, including stem cell research, cloning and genetic engineering, are yet to be appropriately worked out. In particular, with regard to genetic testing, children must be recognized as human beings in their own right, and not as mere objects of their parents’ wishes: We must take cognizance of the fact that being a female is not a disease. Except for severe sex-linked genetic disorders, the use of genetic services for the purposes of gender selection and consequent abortion is unacceptable.

EMPOWERING WOMEN WILL IMPROVE BIOETHICS AND HEALTHCARE FOR BOTH GENDERS

The empowerment of women and the recognition of women’s rights in developed nations have fostered renewed focus on gender-specific care and the inclusion of women in research projects and policy formulation. Africa, however, lags behind due to abject poverty and the illiteracy of African women. As we move to improve bioethics structures on our continent, we must ask ourselves why women are not being included in these structures.

Bioethics committees in Africa must foster greater participation by women scientists. The input of women scientists is needed if we are to establish frameworks for good research governance based on international guidelines and taking into account local cultural, social, medical and legal realties. These new frameworks should provide guidance for establishing local ethics groups that are viable and functional, informed consent processes adapted to Africa, and improved standards of care(ref) with adequate compensation to research participants and communities. Post-research benefits in case of injury must also be outlined(ref).

Women are generally the healthcare custodians for themselves, their families, their children and the elderly. Therefore, issues of clinical research disproportionately affect the lives of women and have major bioethical implications for them. Consequently, we must encourage a greater number of female scientists. They would no doubt better understand the impact of science and new technologies on the lives of women. Women scientists should also be allowed to play a greater role in the design of clinical trials, especially those that affect women directly, and they should be given better access to the benefits of research. Women must also be given a prominent place at the bioethics table if they are to influence policy and protect the interests of women in general. Is this affirmative action? Yes, and in the long run it will improve healthcare and benefit both genders.
REFERENCES

1. CIOMS – Council for International Organisations of Medical Sciences 2002. International Ethical Guidelines for Biomedical Research involving Human Subjects. Geneva.
2. World Medical Organisation. Declaration of Helsinki. BMJ 1996, 313(7070)1448-1449.
3. Africans discuss ethics of biomedical research. Lancet 2002 359:16
4. Medical Genetics and Biotechnology Implications for Public Health. Draft/Rev.14 May 1999.
5. Hugo Ethics Committee Statement on Benefit-Sharing (April 2000).
6. Better regulation needed for ethical research in Africa. Science in Africa Merck article 2006 by Sylvester C. Chima.
7. Standard of Care should reflect local conditions and not the best western standards. Bhutta.
8. BMJ. 2004:329, 1114-5
9. National Bioethics Advisory Commission – Presidential Bioethics Commission Issues. Report on clinical trials research in developing countries. Bethesda, NBAC (2005)

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• Africa 
• bioethics 
• developing countries 
• women