5. Fair Distribution Of The Burden and Potential Benefits of Research

In research ethics, justice refers specifically to the fair distribution of the burden and potential benefits of taking part in research. The meaning of a ‘fair distribution’ is often debated. Yet typically, researchers respect justice by ensuring that those who share in the burdens of research participation (e.g. by taking experimental medicine) also share in its potential benefits.

A more challenging aspect of justice is ensuring that research results will be accessible to both in general those who will benefit from them and more specifically those who took the research burden.

Planning to exclude groups of individuals from research (systematic exclusion) can also result in unfair distribution of benefits. A group might be excluded or suffer adverse drug reactions due to the lack of specific research on their shared characteristics, such as age, environment or nutrition. Exclusion of an affected group from a single research study might not be problematic on its own, but the exclusion of an affected group from an entire field or programme of research is certainly problematic. It is important to take a global view on systematic exclusion of certain groups and give serious thought to the ‘90/10 gap’, as described below:

Quote from World Health Organisation (WHO): ‘The majority of biomedical research has been predominantly motivated by concern for the benefit of already privileged communities. This is reflected by the fact that the WHO estimates that 90% of the resources devoted to research and development on medical problems are applied to diseases causing less than 10% of the present global suffering. The establishment of international guidelines that assist in strengthening the capacity for the ethical review of biomedical research in all countries contributes to redressing this imbalance.’

[WHO Operational Guidelines for Ethics Committees, 2000]