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Justice – being fair to research participants

Posted on by Leslie Gelling in Ethics, Justice, Research, Research ethics

In my previous blogs I considered beneficence, non-maleficence and fidelity so now it’s time to consider the fourth ethical principle – ‘justice’.  This principle requires that researchers are always fair to the participants in their research and that the needs of research participants should always come before the objectives of the study.  Where compliance with this principle might sometimes prove challenging for researchers is in ensuring that all groups in society, regardless of how vulnerable they might be perceived to be, are able to benefit from being involved in research.  Not involving, or making it difficult to involve, any patient group in clinical research could be described unjust.

It could be argued that all patients invited to participate in research are vulnerable because of the possible power relationship between them and the researchers.  There are, however, some groups who are clearly more vulnerable than others.  Older people, children and young people, people with mental health problems and people who might lack the capacity to consent for themselves might all add a complexity to the conduct of a research project, especially with regard to seeking informed consent, but this does not mean that researchers should not seek to undertake research with these groups.

Before the introduction of the Mental Capacity Act 2005 there was a grey area around issues of consent and assent for the involvement of some groups in research.  Between 1997 and 2003 I was involved in research with patients who had sustained serious head injuries and were being treated in a critical care unit.  At the time we used the principle of justice to convince the research ethics committee that we should be able to involve these individuals in research despite the fact that they were unable to consent for themselves.  We argued that the care these seriously head-injured individuals might receive could not be developed and improved if they couldn’t be involved in research.

Fortunately the Mental Capacity Act 2005 has largely eliminated this grey area but the principle of justice remains a key principle when planning and conducting research.  For example, many individuals are willing to participate in research, and to take on the considerable burden often associated with clinical research, but is it fair that they also be exposed to economic harm by engaging in the research?  Repeated visits to the research site can have cost implications for research participants that might influence their decision to participate in the research.  This is why research ethics committees will often insist, especially in industry sponsored research, that participants are reimbursed for any costs they might incur.

This series of blogs is considering the seven ethical principles and, as one would probably expect, there will inevitably be considerable overlap between the principles.  For example, it isn’t possible to consider non-maleficence without also considering fidelity.  Whilst researchers might not spend much time focusing on the principle of justice, it clearly permeates through each of the six other ethical principles.  In my next blog I will turn to ‘veracity’, the principle concerned with being truthful, which undoubtedly has significant links to justice.  The history of research ethics is littered with examples of research where researchers paid too little, if any, regard to justice and veracity with the result that many research participants have been harmed.

 

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