A telephone survey of factors affecting willingness to participate in health research surveys.

BACKGROUND: In recent years, reduced participation has been encountered across all epidemiological study designs, both in terms of non-response as well as refusal. A low response rate may reduce the statistical power but, more importantly, results may not be generalizable to the wider community. METHODS: In a telephone survey of 1413 randomly selected members of the Australian general population and of 690 participants sourced from previous studies, we examined factors affecting people's stated willingness to participate in health research. RESULTS: The majority of participants (61 %) expressed willingness to participate in health research in general but the percentage increased when provided with more specific information about the research. People were more willing if they have personal experience of the disease under study, and if the study was funded by government or charity rather than pharmaceutical companies. Participants from previous studies, older people and women were the groups most willing to participate. Younger men preferred online surveys, older people a written questionnaire, and few participants in any age and sex groups preferred a telephone questionnaire. CONCLUSION: Despite a trend toward reduced participation rates, most participants expressed their willingness to participate in health research. However, when seeking participants, researchers should be concrete and specific about the nature of the research they want to carry out. The preferred method of recommended contact varies with the demographic characteristics.

Nursing in asylum seeker detention in Australia: care, rights and witnessing.

The system of asylum seeker detention in Australia is one in which those seeking refuge are stripped of many of their rights, including the right to health. This presents serious ethical problems for healthcare providers working within this system. In this article we describe asylum seeker detention and analyse the role of nurses. We discuss how far an "ethics of care" and witnessing the suffering of asylum seekers can serve to improve their situation and improve ethical nursing practice.

Placing ethics in the centre: negotiating new spaces for ethical research in conflict situations.

Issues of power and consent, confidentiality, trust, and benefit, risks to researchers, and potential harm to participants, are all contested when working with different cultures and within environments marked by violence and insecurity. Difficulty resolving these dilemmas may paralyse ethics committees, may fail to give the guidance sought by researchers, and will not help populations who are among the world's most vulnerable. Even where efforts are made to respond to ethical guidelines and to improve practice, considerable impediments are present in many developing countries, including lack of formal ethical review structures in unstable settings, lack of required skills, limited political and institutional recognition of ethical issues, competing interests, and limitations in clinical and research practice (Elsayed 2004, Macklin 2004). In conflict settings, these limitations are more marked, and the responsibilities of the researcher for ethical practice are greater, but the mechanisms for oversight are weaker. Moreover, the constant focus on vulnerabilities and problems, and the often almost total lack of recognition of strengths and resilience, can further disempower already exploited groups and individuals. The capacity of refugees and communities in conflict to take an active role in the research process is seldom acknowledged, and undermines the potential for more innovative research which can help generate the evidence for better policy and practice.

Ethical considerations of clinical trials to prevent vertical transmission of HIV in developing countries.

PIP: The Public Citizen's Health Research Group recently called attention to ethical concerns with trials of AZT which are either planned or underway in developing countries. The trials are being conducted to determine the minimum dose of AZT needed to prevent the vertical transmission of HIV from infected mothers to their unborn children. To that end, women who have given their informed consent to enter the trials are randomized into various dosage and placebo arms of the trials. The problem with this standard trial format in this case is that AZT is already proven capable of blocking approximately two thirds of transmissions of HIV to the fetus. The Public Citizen's Health Research Group therefore argues that the trials violate the Helsinki Declaration in that every patient enrolled in a clinical trial should be assured of receiving the best available treatment. Since these study subjects cannot obtain HIV prophylaxis elsewhere, they may enter the trials out of desperation, thereby invalidating their ability to autonomously consent to study participation. The author considers the ideal of informed consent which equates autonomy with competence rather than with freedom, whether freedom equals choice, and freedom, autonomy, and trials in developing countries. AZT vertical transmission trials could be markedly improved by replacing the placebo arm with a contrasting dose cohort.^ieng

[Ischemic episodes during daily activities and progression of ischemic heart disease].

In patients with coronary artery disease, ischemic episodes, the majority of which are silent, can be detected electrocardiographically during daily activities by Holter ambulatory monitoring. We here summarize our experience with the prognostic significance of such ischemic episodes, silent or symptomatic. In 356 patients the progression of ischemic heart disease was evaluated by clinical follow-up averaging 2 years. Death, infarction, unstable angina, referral for coronary bypass surgery or balloon angioplasty were significantly more common in those with ischemic episodes on Holter monitoring than in those without. Thus, in addition to the results of the treadmill exercise test and determinations of left ventricular ejection fraction, the appearance of ischemic episodes is also of prognostic significance.