Ethical Guidance and Epidemiological Studies

The basic principles for epidemiological research concern obtaining informed consent, protecting privacy, maximizing benefits, minimizing risks and potential harms, and ensuring scientific validity. This chapter focuses on a selection of those principles that currently warrant specific attention, because attention for them can make research responsible, prevent it from going to waste, and increase its value. We argue that there are good grounds to regard research as a social good and that therefore there need not be tension between promoting the interests of society and protecting those of the individual. However, this is not something which can be taken for granted. At least two conditions must be fulfilled before research can be viewed as a social good: It has to address research questions that have social value, and it needs to be organized in ways that respect stakeholders as free and equal. The latter condition implies at least that forms of public and patient involvement and engagement are used to increase the clinical relevance of research and that a proper form of governance for stored data and specimen stored is used.