Vision  

Why should questions of justice be central to discussions of research ethics and bioethics in developing countries?

Until fairly recently, bioethics has been dominated by an individualist approach to ethical issues. In part, this is due to the origins of bioethics in medical ethics and the Hippocratic tradition, with its emphasis on the physician-patient relationship. This focus on the individual is obvious in the kinds of concern that have commonly received the most attention, such as informed consent, paternalism and autonomy, and harm to persons.

As bioethics has expanded to include medical and (international) research ethics, the limitations of approaching bioethics questions on a purely individual level have become increasingly apparent. Making sense of ethical issues in the conduct of international research requires not only recognition of ethical issues at the public health or population level, but also an appreciation of how historical, social, cultural, economic and political forces (local, national, and global) impact on the health as well as attempts to study and improve it.

This project explores a social justice perspective that seeks to incorporate and transcend an individualist approach to bioethical issues. But how are bioethics and bioethics capacity building in Francophone Africa connected to social justice?

To get a glimpse of what ‘justice’ is doing here, consider the following:

• Life expectancy at birth (2002): Zambia (32.7 years) and Japan (81.5 years)

• Under 5 mortality rate per 1000 live births (2002): Burkina Faso (207) and Canada (7)

• Physicians per 100,000 people (1990-2003): Congo-Brazzaville (25) and the Netherlands (328)

• % of population with sustainable access to affordable essential drugs (1999): France (95-100%) and Burundi (0-49%)

• Total health care expenditure per capita (2001): Democratic Republic of Congo ($12) and the United States ($4887)

It is widely recognized that these and many other striking differences in global health cannot be explained from within a strictly biomedical perspective. Nor are they the result of accidents or natural disasters. They are largely rooted in man-made political, social, economic and gender inequalities between and within nations.

Equality and justice, as bioethicist Norman Daniels writes, are good for your health. Poverty, oppression, civil conflict, discrimination and stigma are not.

As political philosophers are quick to point out, not every case of inequality is a case of injustice. However, a great many of the inequalities impacting on health worldwide can be reasonably traced back to historical and ongoing abuses of power by privileged societies, groups and institutions.

This means the fight to bridge global and social differences in health will often come down to a struggle for justice. 

But what’s all this got to do with bioethics?

Many of the ethical issues raised by international biomedical research, especially in low-income countries, are ultimately rooted in unjust forms of inequality. For example:

• Undue inducements. In industrialized countries, those who volunteer for research studies generally come from an economic underclass, and are partly attracted to the studies by financial or non-financial incentives. In order to avoid undue inducement, these incentives are kept modest. In low-income countries, the problem of undue inducement may be more acute. Prospective participants may feel compelled to enter a research study, even a ‘non-therapeutic’ one, in impoverished communities where the doctor-patient ratio may be upwards of 20,000 to 1. Simply the prospect of being seen by a medical doctor may be enough to motivate participation. Some problems with inducements in international research are therefore rooted in poverty and the crises faced by health systems in low-income countries, such as the ‘brain drain’ of health care workers from low-income countries to the rich North. 

• Post-trial obligations: according to international guidelines, research institutions must make arrangements to provide study participants with access to prophylactic, diagnostic and therapeutic procedures identified as beneficial in the study or access to other appropriate care. Particularly in international research, this requirement raises a number of problems. How is the therapy in the trial to be delivered given the background of weak health infrastructures? Should there be concurrent investment in health systems? For how long is it to be provided? Why should compensation be provided only to the ‘lucky few’ in the trial, and not the wider community? Underlying these research ethics problems is the brute reality that standards of health care in many low-income countries are abominably low.    

In short, many of the ethical problems encountered in international health research are typically rooted in the same social inequalities and injustices that cause the poor health outcomes and partly motivate biomedical research and interventions in low-income countries in the first place.

• Some implications of a 'justice-centered' vision on international research ethics and bioethics