This paper recognizes the complexity of the debate on informed consent and discusses the importance of the ongoing process of consent for people affected by Huntington's disease (HD). Although written information may not be the most appropriate form of obtaining informed consent in qualitative research, it remains an important part of the ethical approval process for health research in the UK. This paper draws on a study in which the information sheet and consent form were specifically designed to help obtain (...) consent from people who may be impaired by the cognitive and physical effects of HD. The forms were developed by drawing on expert opinion and relevant literature and fall in line with recommendations from the Mental Capacity Act 2005 to encourage people to make their own decisions. The paper describes the feasibility of a method for obtaining consent as an ongoing process with patients affected by HD using information sheets and consent forms specifically designed for people with potential cognitive and/or physical impairments. In conclusion, this paper adds a pragmatic approach to the debate on informed consent by describing the development of a written information sheet and consent form being used in a current social research study. Particular emphasis is placed on the importance of written information being adapted according to the needs of potential participants. (shrink)

Even if there is to be a general theory of ethical surveillance, though, it does not follow that the just war tradition is the best place to start. This gets to the heart of argument I make in the paper in that I believe this tradition captures all the relevant principles and misses none out. As a point of clarification, it is important to note that I am drawing on the just war tradition rather than the just war theory. While (...) the theory is, as I see it, a largely 20th century phenomenon, the tradition itself goes back much further, certainly to Augustine and arguably Cicero (Reichberg, Syse and Begby 2006). This is important as, while the theory may be tied to the state as authority (although, as I argue below, I would dispute that it is), the tradition is not (Coates 1997: 156). Tradition or theory, the key point is whether or not it is the best approach. Again, Stoddart is sceptical. He writes that the just war theory is contested and is concerned that in appealing to it we may obscure the ethical values on which it relies. Palm also refers to the contested nature of the theory but picks up on the lack of foundational values on which an ethics of surveillance, using the model I suggest, would draw as it currently stands. (shrink)

The essay considers contemporary surveillance strategies from a Christian ethical perspective. It discusses first surveillance as a form of speech in the light of biblical themes of truthfulness, then draws on principles of subsidiarity and solidarity. Surveillance is dignified as human work whilst its dehumanizing outcomes are challenged. It is concluded that surveillance must contribute to human dignity and that accountability for data must follow a revised model of subsidiarity, appropriate to network rather than linear socio-political relationships. Mutual responsibility for (...) one another's data-image is derived from solidarity which, further, offers a response to the angst of a culture of suspicion. (shrink)

Background As our society is ageing, nursing homes are finding it increasingly difficult to deal with an expanding population of patients with dementia and a decreasing workforce. A potential answer to this problem might lie in the use of technology. However, the use and application of surveillance technology in dementia care has led to considerable ethical debate among healthcare professionals and ethicists, with no clear consensus to date. Aim To explore how surveillance technology is viewed by care professionals and ethicists (...) working in the field, by investigating the ideal application of surveillance technology in the residential care of people with dementia. Methods Use was made of the concept mapping method, a computer-assisted procedure consisting of five steps: brainstorming, prioritising, clustering, processing by the computer and analysis. Various participants (ranging from ethicists to physicians and nurses) were invited on the basis of their professional background. Results The views generated are grouped into six categories ranging from the need for a right balance between freedom and security, to be beneficial and tailored to the resident, and clearly defined procedures to competent and caring personnel, active monitoring and clear normative guidance. The results are presented in the form of a graphic chart. Conclusions There appears to be an inherent duality in the views on using surveillance technology which is rooted in the moral conflict between safety and freedom. Elaboration of this ethical issue has proved to be very difficult. (shrink)