Through the exponential growth in digital devices and computational capabilities, big data technologies are putting pressure upon the boundaries of what can or cannot be considered acceptable from an ethical perspective. Much of the literature on ethical issues related to big data and big data technologies focuses on separate values such as privacy, human dignity, justice or autonomy. More holistic approaches, allowing a more comprehensive view and better balancing of values, usually focus on either a design-based approach, in which it (...) is tried to implement values into the design of new technologies, or an application-based approach, in which it is tried to address the ways in which new technologies are used. Some integrated approaches do exist, but typically are more general in nature. This offers a broad scope of application, but may not always be tailored to the specific nature of big data related ethical issues. In this paper we distil a comprehensive set of ethical values from existing design-based and application-based ethical approaches for new technologies and further focus these values to the context of emerging big data technologies. A total of four value lists were selected for this. The integrated list consists of a total of ten values: human welfare, autonomy, non-maleficence, justice, accountability, trustworthiness, privacy, dignity, solidarity and environmental welfare. Together, this set of values provides a comprehensive and in-depth overview of the values that are to be taken into account for emerging big data technologies. (shrink)

We respond to the comments provided on our paper `Principles help to analyse but often give no solution-secondary prevention after a cardiac event’ by Simon Waltho, and highlight points of clarification.

Background: The four principles of Beauchamp and Childress - autonomy, non-maleficence, beneficence and justice - havebeen extremely influential in the field of medical ethics, and are fundamental for understanding the currentapproach to ethical assessment in health care. This study tests whether these principles can be quantitativelymeasured on an individual level, and then subsequently if they are used in the decision making process whenindividuals are faced with ethical dilemmas. Methods: The Analytic Hierarchy Process was used as a tool for the measurement (...) of the principles. Four scenarios, whichinvolved conflicts between the medical ethical principles, were presented to participants and they madejudgments about the ethicality of the action in the scenario, and their intentions to act in the same manner if theywere in the situation. Results: Individual preferences for these medical ethical principles can be measured using the Analytic HierarchyProcess. This technique provides a useful tool in which to highlight individual medical ethical values. Onaverage individuals have a significant preference for non-maleficence over the other principles, however, andperhaps counter-intuitively, this preference does not seem to relate to applied ethical judgements in specificethical dilemmas. Conclusions: People state they value these medical ethical principles but they do not actually seem to use them directly in thedecision making process. The reasons for this are explained through the lack of a behavioural model to accountfor the relevant situational factors not captured by the principles. The limitations of the principles in predictingethical decision making are discussed. (shrink)

Questions of patient autonomy have formed an important part of ethical debate in medicine from at least the post-war period onwards. Although initially important as a counterweight to widespread medical paternalism, recent years have seen a reaction against a widely perceived ‘triumph of autonomy’. In particular, competent patients' refusal of life-saving or clearly beneficial treatment presents complex dilemmas for both healthcare professionals and ethicists. Discussion of the mechanism provided by the Israel Patient's Rights Act of 1996 for ethics committees to (...) override refusal of treatment by such patients has provided several examples in which it seems an obligation to benefit the patient can outweigh concerns regarding respect for their autonomy. However, such analyses as have been undertaken so far may be seen to omit important elements of the moral decision-making process that takes place even when the latter appears to ‘win out’. In addition to helping better prepare clinicians to meet such challenges in the future, a fuller appreciation of those elements that are present in justified cases of coercive treatment may enable them to arrive at a better understanding of what autonomy itself can mean in a medical context. (shrink)