Research Ethics

In these articles I have so far explored the set of duties that call upon patients to participate in clinical research as subjects of it. Here I consider whether they acquire a set of rights in consequence of participation, and what these rights may be.

The practice of conducting research online is in its infancy. Consequently there is debate concerning the ethical implications of online data collection. We outline three approaches to online data collection and focus specifically on the issues of consent and anonymity of participants. We conclude that ethical issues raised when planning and implementing online data collection are no different to those raised by more traditional approaches to data collection.

Ethical codes have been widely put in place by professional associations, universities and other organizations. They observe common standards and procedures which are applied and adapted to local or specialist needs. The early codes such as that of Nuremberg exclusively addressed the rights of participants. This article detects a shift in emphasis. The argument relies on a distinction between morality and ethics and it is contended that ethical codes legitimize kinds of practice that are morally unprincipled. In modern formulations of research ethics there is a tendency to abdicate responsibility for the protection of rights and interests and to pass it from researchers to participants or subjects. The concern is rather more for the security of investigators than for that of participants. It is recognized that codes are here to stay but suggestions are made to recover the spirit of Nuremberg.

This case study appeared in full in the last issue of Research Ethics Review (2006; 2(2): 62). It concerned an investigation of the experiences of black African people, who are HIV positive, in the UK NHS.

When considering submissions ethics committees should be consistent in all aspects of their review. A wide variation in performance is likely to result in the unfair dismissal of good research on the one hand with inadequate ethical review on the other, neither of which is acceptable. The recent annual reports for UK MRECs suggest that the level of unfavourable opinion ranges from 6.9% to 24.2% Although a certain level of inconsistency is inherent in the system of ethical review there is little research to determine how much of that inconsistency in inevitable and how much of it is the result of poor process. The time has come for high quality research to be done to assess the consistency and hence the validity of ethical review.