Research ethics relating to cancer

David Carpenter

Research is surely a good thing; it is not immediately obvious that there are any ethical considerations beyond some sort of imperative to undertake it. After all, there would be no reliably effective treatment and care were it not for research and the evidence base of health-care interventions would simply not exist. Effective cancer care and treatment, perhaps more than any other discipline, rely on previous and current research and we hope that future endeavours will provide hitherto elusive, curative treatment for some of the most serious cancers. Although strongly supporting research, this chapter aims to elucidate necessary limits on the enterprise. These limits may be identified by considering issues such as the motives of the researcher, the value of the research and, most importantly, the welfare of participants. In simple terms, these limits highlight the differences between research (which might actually provide extremely useful knowledge) and ethical research.

Ethical research is, ideally, altruistically motivated and worthwhile, and ensures the welfare of participants. These ideals are seldom fully attainable and the purpose of ethical review of research proposals is to assess the degree to which they are compromised and whether the proposed study falls within acceptable limits. It is likely that many readers will be considering undertaking a research project, probably as part of undergraduate or postgraduate study. The primary purpose of such a study will be the award of a degree: hardly an altruistic motive. It is also highly likely that the project will be small scale with little potential to provide any significant benefit to participants or others in the future. Although it might be unlikely that any participants will suffer significant harm, they will necessarily have to give their time and energy. To put the matter bluntly, students often use patients to gain a degree.

It is this issue of using people, albeit in the pursuit of valuable knowledge, that makes research ethically sensitive. Health-care research poses some of the greatest concerns, given that in most cases participants are sick, and in some cases they might be critically ill or dying. Cancer patients are often in these latter categories. Is it defensible to use them to gain knowledge, particularly when they, as participants, might gain little or no benefit and, indeed, might suffer considerable harm? Of course, the answer to this question is 'it all depends'. It depends on the skill of the researcher, the value of the research and the risks posed to the participants. Again, it is the purpose of ethical review to establish whether the proposed research satisfies the 'it all depends' criteria alluded to above.

This chapter goes on to consider research ethics from the perspectives of, first, the researcher, second, the research and, third, the participant. It will include an overview of the nature and roles of research ethics committees, particularly NHS Research Ethics Committees (NHSRECs). Before embarking on this enterprise, however, it is worth reflecting on some historical and some surprisingly recent examples of unethical research.

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