The revision of the Declaration of Helsinki: past, present and future

The World Medical Association's Declaration of Helsinki was first adopted in 1964. In its 40-year lifetime the Declaration has been revised five times and has risen to a position of prominence as a guiding statement of ethical principles for doctors involved in medical research. The most recent revision, however, has resulted in considerable controversy, particularly in the area of the ethical requirements surrounding placebo-controlled trials and the question of responsibilities to research participants at the end of a study. This review considers the past versions of the Declaration of Helsinki and asks the question: How exactly has the text of the Declaration changed throughout its lifetime? Regarding the present form of the Declaration of Helsinki we ask: What are the major changes in the most recent revision and what are the controversies surrounding them? Finally, building on the detailed review of the past and present versions of the Declaration of Helsinki, we give consideration to some of the possible future trajectories for the Declaration in the light of its history and standing in the world of the ethics of medical research

Living on the margin : Understanding the experience of living and dying with frailty in old age

Within policy and practice there is an increasing interest in the care of frail elders. However understanding of the experience and challenges of living and dying with frailty in older age is currently undeveloped. Frailty is often used as a synonym for the increasing infirmities that accompany ageing and the slow dwindling dying trajectory of many elders. However, there is little empirical work on the experience of being frail to inform social gerontological perspectives and welfare provision. Through analysis of repeated in-depth interviews over 17 months (2006-2008) with 17 frail elders living at home in the U.K., key factors that shape elders' experience of being frail emerged. The study argues that the visible markers of functional limitations and the increasing social losses of old age bring finitude to the fore. To retain anchorage in this state of imbalance, frail elders work actively to develop and sustain connections to their physical environment, routines and social networks. This experience can be conceptualised as persistent liminality; a state of imbalance " betwixt and between" active living and clinically recognised dying. This paper highlights the precarious and often protracted dying trajectory of frail older people. Whilst it could be argued that developing into death in older age is part of a normal and successful course after a life long-lived, recognition of and support for older people deemed frail is lacking. Frail elders find themselves living in the margin between the Third and Fourth Age with little recognition of or support for the work of living and dying over time. This experience of frailty contests dominant cultural and welfare practices and policy frameworks that operate in binary modes: social or health; independent or dependent; living or dying.Peer reviewe