Issues concerning informed consent for medical research among non-westernized ethnic minority patients in the UK

The ethics governing research are evolving rapidly, and we need to be sure that the principles of good practice are applied in all social groups. When research involves people from ethnic minorities, a major but neglected issue is the validity of consent. Informed consent, a legal concept developed over the years in Western Europe and North America, demands much more than a signed document. It is a process of communication in which the underlying ethical concepts, especially that of respect for autonomy, are not shared by all cultures. Here is what the Helsinki Declaration, in its 2000 version, says about informed consent: 'In any research on human beings, each potential subject must be adequately informed of the aims, methods, sources of funding, any possible conflict of interest, institutional affiliations of the researcher, the anticipated benefits and potential risks of the research and the potential discomforts it may entail. The subject should be informed of the right to abstain from participation in the study or to withdraw at any time without reprisal'.1 Essentially informed consent consists of three steps. First, the research team provides full and transparent information about the nature of the project and the rights of the participant. Second, the participant must understand what is being asked and be competent to decide. Third, the person must decide freely whether or not to contribute. Because each element of this process may conflict with cultural values, research in certain UK minority groups has been problematic. In this paper we address the dilemmas of conducting research among individuals who, sometimes despite many years of living in the UK, adhere to their original religious and cultural values. Our own research experience has centred on elderly Bangladeshis in the UK, many of whom are illiterate.2 We acknowledge, however, that a large proportion of individuals from ethnic minority groups in the UK are well educated and in tune with the Western way of life.