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Ethical issues in HIV research in poor countries.

PURPOSE: To increase awareness of the potential for conducting unethical research in poor nations in the name of scientific inquiry, and to enumerate ethical questions in HIV/AIDS research. ORGANIZING CONSTRUCT: Principles of ethics and ethical analysis in clinical research. SOURCES AND METHODS: Review of literature on ethical principles of research in developing nations. FINDINGS: People who participate in clinical trials in poor countries often do so because that may be the only way to gain access to health care. However, access to tested drugs beyond clinical trials is not guaranteed. Participants often do not understand the consequences of being research subjects. CONCLUSIONS: Conducting research in poor nations requires recognition of ethical issues and maintenance of ethical standards, regardless of material wealth of the countries. Ethical standards also indicate including people from the target population in decisions relating to designing and conducting clinical trials.

Clinical Protocols↗

Hospital ethical climates and registered nurses' turnover intentions.

PURPOSE: To investigate (a) the effects of hospital ethical climates on positional and professional turnover intentions of registered nurses, and (b) the relationships among demographic factors, employment characteristics, and positional and professional turnover intentions of registered nurses. DESIGN: A cross-sectional study of randomly selected registered nurses (n=463) in Missouri, USA, conducted in 2003 and 2004. METHODS: A self-administered questionnaire containing the Hospital Ethical Climate Survey, the Anticipated Turnover Scale, and the Nursing Retention Index was used to assess registered nurses' perceptions of the hospital ethical climate and their intentions to leave their position or the nursing profession. Descriptive statistics, Pearson product-moment correlations, and hierarchical regression techniques were used to analyze the data. FINDINGS: The hospital ethical climate explained 25.4% of the variance in positional turnover intentions and 14.7% of the variance in professional turnover intentions. Together, hospital ethical climate, control over practice, the use of educational reimbursement as a retention strategy, gender, and staff sufficiency explained 29.7% of the variance in positional turnover intentions. Hospital ethical climate, patient load, and control over practice together explained 15.8% of the variance in professional turnover intentions. CONCLUSIONS: Of the variables included in this analysis, the hospital ethical climate was most important in explaining nurses' positional and professional turnover intentions.

Analysis of Variance↗

Public health ethics: the voices of practitioners.

Public health ethics is emerging as a new field of inquiry, distinct not only from public health law, but also from traditional medical ethics and research ethics. Public health professional and scholarly attention is focusing on ways that ethical analysis and a new public health code of ethics can be a resource for health professionals working in the field. This article provides a preliminary exploration of the ethical issues faced by public health professionals in day-to-day practice and of the type of ethics education and support they believe may be helpful.

Data Collection↗

Family therapists' ethical decision-making processes in two duty-to-warn situations.

This quantitative study investigated the ethical decision-making process of 177 Missouri members of the American Association for Marriage and Family Therapy using two in-session duty-to-warn scenarios of child abuse and HIV transmission. The components of the critical-evaluative level of ethical decision making include the lower-level decision components of personal/therapeutic response, professional ethics, and legal considerations/laws of the State, and the components of the higher-level decision base, the meta-ethical principles, which are nonmaleficence, autonomy, beneficence, fidelity, and justice. Statistical results indicated that in the child abuse scenario, professional ethics and legal considerations/laws of the State were considered most important, whereas in the HIV scenario, professional ethics were the preferred lower-level decision base. Across scenarios, the preferred higher-level decision base was nonmaleficence. There were differences across the child abuse and HIV scenarios in the perceived significance of the remaining lower-level decision base items as well as differences in perceived significance and ordering of the remaining meta-ethical principles. Limitations are discussed.

Adolescent↗

Diann B. Uustal on excellence in ethics and quality in care. Interview by Susan V. White.

Diann B. Uustal, EdD, is the founder and president of an educational consulting firm, Educational Resources in HealthCare, Inc. She is a facilitator of workshops and seminars in clinical ethics, professional caregiving issues, and values education at hospitals, colleges of nursing and medicine, and specialty nursing, medical, and other professional organizations. She also teaches a graduate course in healthcare ethics and is a professor at the University of Rhode Island. She received a bachelor's degree in nursing from the University of Rhode Island and a master's degree in nursing from the University of Massachusetts. She earned her doctorate in education, majoring in ethics and values in healthcare, at the University of Massachusetts. In 1994, Dr. Uustal completed a year's postdoctoral fellowship in clinical bioethics as a Visiting Fellow at the Kennedy Institute of Ethics at Georgetown University. She has authored numerous articles on healthcare values and ethics, professional issues in nursing, and caring for the caregiver. In addition, Dr. Uustal has published four books, most recently, Caring for Yourself--Caring for Others: The Ultimate Balance and Clinical Ethics and Values: Issues and Insights in a Changing Health Care Environment. Dr. Uustal also has co-edited Teacher Burnout, a book published by the National Education Association. She was a major consultant to the award-winning Concept Media film series "Ethics, Values and Health Care" and wrote the script for the film "Values Clarification."

Caregivers↗

Down's syndrome screening is unethical: views of today's research ethics committees.

BACKGROUND: Screening for Down's syndrome forms part of routine obstetric practice. Ethical considerations relating to genetic screening form a major part of the workload of research ethics committees. This study investigated the attitudes of research ethics committee members to several conditions varying in clinical severity and prognosis, including Down's syndrome. METHODS: The members of 40 randomly chosen research ethics committees were surveyed. A simple questionnaire comprising 19 clinical scenarios based around four "clinical" conditions was designed to review conditions that were potentially embarrassing, affecting life span but not mental ability, premature death, and intellectual impairment with a risk of neonatal cardiac defects (Down's syndrome). Screening tests with different degrees of effectiveness were described and the diagnostic test descriptions ranged from having no risk to an unaffected fetus to causing spontaneous abortion of two normal fetuses for each affected fetus identified. Replies were graded on a scale of 1 to 5. RESULTS: Seventy seven replies were received from 28 different research ethics committees. Screening was supported for treatment of a life threatening condition (95% in favour) but screening for conditions of a slight increase in premature death (14% in favour) or cosmetic features (10% in favour) were considered unethical. Views were ambiguous (49% in favour) about conditions involving significant shortening of lifespan. Down's syndrome screening was considered more ethical when described as a serious condition (56% in favour) than when the clinical features were described (44% in favour). Once increased rates of spontaneous abortion on confirmatory testing were added, 79% (21% in favour) and 86% (14% in favour) stated that screening was unethical (for "serious" and "clinical features" descriptions, respectively). CONCLUSIONS: Down's syndrome screening raises ethical concerns about genetic testing in general that need to be dealt with before the introduction of any prenatal screening test.

Attitude↗

Ethical dilemmas in palliative care: a study in Taiwan.

OBJECTIVES: To investigate the incidence and solution of ethical dilemmas in a palliative care unit. DESIGN: Health care workers recorded daily all dilemmas in caring for each patient. SETTING: Palliative care unit of National Taiwan University Hospital in Taiwan. PATIENTS: Two hundred and forty-six consecutive patients with terminal cancer during 1997-8. MAIN MEASUREMENT: Ethical dilemmas in the questionnaire were categorised as follows: telling the truth; place of care; therapeutic strategy; hydration and nutrition; blood transfusion; alternative treatment; terminal sedation; use of medication, and others. RESULTS: The type and frequency of ethical dilemmas encountered were: place of care (33.3%); truth-telling (32.1%); hydration and nutrition (25.2%); therapeutic strategy (24.8%), and use of medication (19.1%). Ethical problems relating to the place of care and to therapeutic strategy were unlikely to be solved with increased hospital stay and some ethical dilemmas remained unsolved even in the final week in hospital, including place of care (23.2%), truth-telling (17.1%) and therapeutic strategy (11.4%). Problems of truth-telling occurred in nearly half (42.6%) of patients over sixty-five-years-old. Conflicts about blood transfusion were experienced in all patients below 18-years-old, and the dilemmas concerning the place of care occurred most frequently with head and neck cancer patients (43.8%). CONCLUSIONS: The solution of ethical dilemmas required refocusing by medical professionals on the importance of continuing communication. Improved ethical training for professionals would contribute to solving the moral dilemmas of palliative care.

Aged↗

Ethical dilemmas in a psychiatric nursing study.

This article describes the ethical dilemmas encountered by the authors while conducting qualitative research with psychiatric patients as participants. The ethical conflicts are explored in terms of the principles of personal autonomy, voluntariness and awareness of the purpose of the study, with illustrations from the authors' research experience. This study addresses the everyday life of psychiatric nursing in a psychiatric hospital as described by patients, nurses and nursing students. The data were collected in a university hospital in northern Finland, using videotaped observations and recorded interviews. Although no definitive resolutions are proposed to the conflicts, the article endeavours to enhance awareness of the ethically perplexing situations possibly encountered by researchers during a study process. The institution where the study was conducted has a Research Board entitled to resolve ethical questions. The Ethics Review Committee of the Medical Faculty at the University and the Research Board of the University Hospital's Department of Psychiatry reviewed and accepted this research plan. They also recommended solutions to some specific ethical problems that occurred in the course of the study. Moreover, some ethical dilemmas required further study and debate during the process.

Behavioral Research↗

Ethical, social, and legal issues surrounding studies of susceptible populations and individuals.

Calls for professional accountability have resulted in the development of ethics guidelines by numerous specialty and subspecialty groups of scientists. Indeed, guidelines among some health professions now address vulnerable and dependent groups: but these are silent on issues related to biomarkers. In parallel, attention has been drawn to human rights concerns associated with attempts to detect hypersusceptible workers, especially in democratic countries. Despite this, concern for vulnerable populations grows as advances in biomarker technology make the identification of genetic predisposition and susceptibility markers of both exposure and outcome more attainable. In this article, the principles derived from the ethical theory of utilitarianism provide the basis for principle-based ethical analysis. In addition, the four principles of biomedical ethics--respect for autonomy, beneficence, nonmaleficence, and social justice--are considered for biomarker studies. The need for a context in which ethical analysis is conducted and from which prevailing social values are shown to drive decisions of an ethical nature is emphasized; these include statutory regulation and law. Because biomarker studies can result in more harm than good, special precautions to inform research participants prior to any involvement in the use of biomarkers are needed. In addition, safeguards to maintain the privacy of data derived from biomarker studies must be developed and implemented prior to the application of these new technologies. Guidelines must be expanded to incorporate ethical, social, and legal considerations surrounding the introduction of new technologies for studying susceptible populations and individuals who may be vulnerable to environmental exposures.

Biomarkers↗

Ethical issues related to health care: the older adult's perspective.

Although ethical issues in health care receive much publicity, attention is rarely given to the non-dramatic, everyday ethics of health care. This American Nurses' Foundation (ANF) funded pilot study was significant because it was the first to investigate everyday ethical issues from the perspective of older adult health care consumers. The overall goals of this descriptive study were to pilot interview questions and study design, as well as collect preliminary data about the ethical issues older adults in two settings (a residential facility and a non-residential community center) encounter related to health care. A sample of 10 participants answered several open-ended questions in an audiotaped interview; the tape was subsequently transcribed verbatim and analyzed using content analysis methods. Although two open-ended questions were effective in eliciting ethically related health care issues, the addition of specific examples to those questions was suggested. Health care related ethical issues identified by the older adults were categorized as Attentiveness, Respect, Care, Finances, and Health Care Systems. Although the residential participants did not experience financial issues as did the community participants, the highest priority issues for both residential and community participants were in the Attentiveness and Respect categories. The clinical implication of these findings is that nurses best address older adult health care consumers' most important ethical issues by providing attentive, respectful care in all they do.

Aged↗

Ethical issues in geriatrics: a guide for clinicians.

Because of demographic trends, it is reasonable to expect that clinicians will care for an increasing number of elderly persons with challenging medical and psychosocial problems. These problems and issues, in turn, may lead to daunting ethical dilemmas. Therefore, clinicians should be familiar with ethical dilemmas commonly encountered when caring for elderly patients. We review some of these dilemmas, including ensuring informed consent and confidentiality, determining decision-making capacity, promoting advance care planning and the use of advance directives, surrogate decision making, withdrawing and withholding interventions, using cardiopulmonary resuscitation and do-not-resuscitate orders, responding to requests for interventions, allocating health care resources, and recommending nursing home care. Ethical dilemmas may arise because of poor patient-clinician communication; therefore, we provide practical tips for effective communication. Nevertheless, even in the best circumstances, ethical dilemmas occur. We describe a case-based approach to ethical dilemmas used by the Mayo Clinic Ethics Consultation Service, which begins with a review of the medical indications, patient preferences, quality of life, and contextual features of a given case. This approach enables clinicians to identify and analyze the relevant facts of a case, define the ethical problem, and suggest a solution.

Advance Directives↗

Critical thinking by nurses on ethical issues like the termination of pregnancies.

This research forms part of a larger interdisciplinary research project on the termination of pregnancies. The focus of this part of the project is on the ethical issues related to termination of pregnancies. The practice of the professional nurse is confronted with ethical dilemmas and disputes. Whether the nurse chooses to participate in the termination of pregnancies or not, the core function of the nurse is that of counseling and ethical decision-making. Effective counseling requires empathy, respect for human rights and unconditional acceptance of a person. Making ethical decisions implies making critical decisions. It is self-evident, therefore, that such decisions should be based on sound arguments and logical reasoning. It is of vital importance that ethical decisions can be justified on rational ground. Decision-making is a critical thinking approach process for choosing the best action to meet a desired goal. The research question that is relevant for this paper is: Are nurses thinking critically about ethical issues like the termination of pregnancies? To answer the research question a qualitative, exploratory, descriptive design was used (Mouton, 1996:103-169). Registered nurses were selected purposively (Creswell, 1994:15). 1200 registered nurses completed the open-ended questionnaires. Focus group interviews were conducted with 22 registered nurses from a public hospital for women and child health services. Data analysis, using secondary data from open-ended questionnaires and transcribed focus group interviews, were based on the approach of Morse and Field (1994:25-34) and Strauss and Corbin (1990). The themes and categories from open coding were compared, conceptualized and linked with theories on critical thinking (Paul, 1994; Watson & Glaser, 1991 and the American Philosophical Association, 1990). The measures of Lincoln and Guba (1985) and Morse (1994) related to secondary data analysis were employed to ensure trustworthiness. Based on these findings the researcher concluded that nurses are not thinking critically when making ethical decisions concerning the termination of pregnancies. Recommendations are made as a possible solution for this problem.

Abortion, Legal↗

A comparative analysis of ethical development of student nurses registered for a basic degree and basic diploma programme in KwaZulu Natal.

A comparative descriptive study was conducted to establish whether the Comprehensive Basic Nursing Course (CBNC) is able to develop students ethically, and how educational preparation from two different programmes (basic degree and basic diploma) influence their ethical development. This study was conducted because of the concerns on the escalating number of litigations instituted against nurses. Several studies have indicated that some of these litigations are as a result of the growing complexity of the health care system and the society's increasing awareness of their human rights. Some studies have shown that nurses are failing to make principled and ethically sound decisions because they are inadequately prepared to handle ethical issues in an ethically responsible manner. A purposively selected sample of third and fourth year students from both programmes was used. Data was collected from both groups through the use of questionnaires. The findings revealed that the students are developing ethically in a CBNC but the level of ethical development is influenced by their educational preparation, teaching approaches and strategies used, clinical environment, hospital bureaucracy, rules and policies.

Adult↗

Ethical approval for health research in central and eastern Europe: an international survey.

UNLABELLED: Research ethics committees in central and eastern Europe are increasing in importance as institutions in this region host a growing and more diverse range and volume of health-related research, with funding from an increasingly wide variety of sources. AIM: To describe the arrangements for ethical supervision of research in eleven countries of central and eastern Europe, so as to identify examples of good practice and areas of weakness. METHODS: A questionnaire was sent to key informants known to be active in health-related research in Albania, Bulgaria, Croatia, Czech Republic, Estonia, Hungary, Lithuania, Poland, Romania, Russia, and Ukraine in October 2000. It sought information on the composition and functioning of ethics committees, their training and any public concerns about the ethics of health-related research. RESULTS: All countries except Ukraine confirmed that decision-making committee structures operate to oversee the ethics of research on human subjects. In all countries except Albania committees are comprised of medical and non-medical members. Members received specific training in bioethics in Estonia, Hungary, and Lithuania. Countries had made different degrees of progress in implementing arrangements for coordinating multi-site research and for monitoring research once it had commenced. Public concern about ethical issues arising from health-related research was rare. CONCLUSION: The development of ethical supervision of health-related research in central and eastern Europe varies considerably. In some countries there are significant weaknesses that should be addressed. Other countries could serve as examples of good practice in the region. A major challenge is how the public can be involved in this process.

Bioethics↗

Ethical issues among Finnish occupational physicians and nurses.

A postal survey was conducted among 200 Finnish occupational physicians and nurses on their ethical values and problems. Both groups considered 'expertise' and 'confidentiality' as the most important core values of occupational health services (OHS) corresponding with newly published national ethical guidelines for occupational physicians and nurses in Finland. Nearly all respondents had encountered ethically problematic situations in their work, but ethical problems with gene testing in the near future were not considered likely to occur. Only 41% of the nurses and 36% of the physicians had received some training in the ethics of OHS, and 76% of all respondents never used available ethical guidelines. According to the results, even if ethics play a vital role in OHS, the ability to critically evaluate one's own performance seems quite limited. This creates a need for further training and more practicable national guidelines.

Adult↗

Resolving ethical dilemmas about privacy and confidentiality. Guidelines for decision making.

Ethical dilemmas are, by the very fact of being dilemmas, situations in which the right action is not immediately evident. A significant number of the ethical dilemmas faced by health-care and other professionals include respect for privacy or confidentiality as one of the values involved. To say that a situation represents an ethical dilemma is not to say that it is unresolvable; nor is it to say that any single resolution is as good as another. Rather, ethical dilemmas can be resolved adequately and consistently by applying a clear framework of analysis and guidelines for decision making. In this article, I describe ways of thinking about privacy and confidentiality that make ethical concerns related to these values more manageable. Despite the pluralistic nature of our society, the systematic study of contemporary ethical issues has led to some widely supported approaches for resolving ethical dilemmas. Although it would be exaggerating to claim full consensus among ethicists on what follows in this article, it is not exaggerating to say that the perspective represents a common approach to understanding privacy and confidentiality obligations and that many find these guidelines helpful in addressing specific situations.

Civil Rights↗

Research on humans during space flights: ethical problems.

Experiments on humans during space flights call for ethical reflection, which is more than a mere assessment of the risks and a concurrent ethical evaluation of manned space flight as such. Although it may be desirable to harmonize ethical standards for international space flights especially against the background of the construction of an International Space Station (ISS) the application of ethical standards for human experiments on earth to the situation in space is not (at all) straight forward. The analysis shows that an ethical evaluation of experiments in space involving humans cannot be made solely on grounds of those principles which apply in comparable cases of terrestrial experiments. The very special conditions in space necessitate further ethical considerations. From this it may of course not be inferred that the current practice of strict ethical evaluation of experiments on humans becomes obsolete once we leave the planet earth. On the contrary, it means that widely accepted principles--like free and informed consent, or data protection and privacy--may need to be amended in order to take proper account of the special conditions in space and the need to achieve a consensus among the different persons involved.

Aerospace Medicine↗

[Human in vitro fertilization: technics and ethics].

IVF is certainly one of the new medical technologies where ethical debates are the most frequent and heavy. Three illustrations will be presented: The improvement of ovulation induction techniques have increased the number of supernumerary embryos. How to deal with these embryos, on which principles and what do the patients think about it? Introduction in the early 90' of assisted fertilization techniques (ICSI) have largely extended IVF indications and improved the success++ rate. Nevertheless, it will be demonstrated that it's implementation was a hard process for which the creation of embryos for research was a crucial step, opening another passionate ethical debate. Oocyte donation which came true thanks to IVF, will give the opportunity to illustrate an unusual consequence of ethics on technical aspect; due to an ethical choice (anonymous donation) we have been able to improve by a factor 3 the clinical efficiency of our oocyte donation program. An example of enhancement of the technique due to ethics, a very important fact in the situation of shortage of oocytes for donation. In conclusion, it appears that the ethical debate does not only focus on the legitimacy of this "medicine of desire" but also demonstrate that the development as well as the daily practice of IVF makes a clear vision of ethical choices mandatory and indissociable of technical aspects themselves.

Attitude to Health↗