Principles of autonomy and self-determination have been upheld as vital to modern-day medical and ethical practice. However, the complexities of current health care and changes in the expectation of some patients and their families justify a review of such concepts. Their limitations and relativities may suggest that other descriptions of partnership and negotiated goal-setting, while based on respect for autonomy, reflect more modern and ideal multi-disciplinary practices. Discussion should extend beyond the 'classic' participants of patient and doctor to a more (...) realistic picture where other health carers are included. It is therefore apposite that other professional relationships are considered as they affect areas of doctors' and patients' responsibilities. Such partnership between members of the team may not be without problems and conflict, but the principle of negotiated agreements could result in more long-term harmony, and greater patient welfare. (shrink)

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)

Given the dramatic rise in the frequency of nursing research that involves eliciting personal information, one would expect that attempts to maintain the balance between the aspirations of researchers and the needs and rights of patients would lead to extensive discussion of the ethical issues arising. However, they have received little attention in the literature. This paper outlines and discusses some of the issues associated with qualitative research. The discussion converges on the specific case of phenomenological research, which involves the (...) invasion of participants’ personal worlds, and draws attention to some of the ethical issues that arise when the participants are psychiatric patients. (shrink)

In the United Kingdom (UK), ethical guidance for doctors assumes a therapeutic setting and a normal doctor–patient relationship. However, doctors with dual obligations may not always operate on the basis of these assumptions in all aspects of their role. In this paper, the situation of UK occupational physicians is described, and a set of models to characterise their different practices is proposed. The interaction between doctor and worker in each of these models is compared with the normal doctor–patient relationship, focusing (...) on the different levels of trust required, the possible power imbalance and the fiduciary obligations that apply. This approach highlights discrepancies between what the UK General Medical Council guidance requires and what is required of a doctor in certain roles or functions. It is suggested that using this modelling approach could also help in clarifying the sources of moral conflict for other doctors with “dual obligations” in their various roles. (shrink)

This article describes how ethical guidelines have been applied while interviewing psychiatric patients who were recovering from mental illness, especially from psychosis, to allow nurses to understand these patients’ experiences. Because psychiatric patients are vulnerable, their participation in research involves ethical dilemmas, such as voluntary consent, legal capacity to consent, freedom of choice, and sufficient knowledge and comprehension. The first part of this article describes the most important ethical guidelines concerning human research. These have been published by different organizations, departments, (...) committees and commissions for the purpose of protecting human rights and dignity whenever research participants are vulnerable persons or their capacity to consent is limited. At present, however, no special regulations govern research involving adults who have been diagnosed with a condition characterized by mental impairment. Furthermore, a relatively small body of research has documented the effects of various disorders on decision-making capacity per se. One basic moral and policy question is whether these individuals should ever be involved in research. The second part of this article concentrates on how the investigator made sure that participating patients had understood their role in this particular piece of nursing research. During the interviews the investigator noticed that some ethical dilemmas required further study and debate because of the lack of consensus on the proposed regulatory provisions on research involving institutionalized persons and their ability to make an informed and voluntary decision. (shrink)