Ethical issues in qualitative health research with homeless youths

BACKGROUND: There is a need for increased guidance for the ethical conduct of qualitative research with vulnerable populations such as homeless youths. AIM: The purpose of this paper is to provide an overview of the main ethical challenges of conducting qualitative research with homeless youths and to propose possible solutions to these challenges. METHODS: This paper was informed by a review of professional guidelines for the ethical conduct of adolescent health research, national (US) and international bioethics bibliographical searches, and personal experience with qualitative research with homeless youths. FINDINGS: The main ethical challenges of conducting qualitative research with homeless youths include establishing and maintaining healthy researcher roles and boundaries, addressing the risks of researcher burn-out and safety issues, assuring optimal confidentiality, and avoiding sensationalism and voyeurism. CONCLUSION: It is important for qualitative researchers who work with vulnerable populations to ensure that research is conducted in the most ethical way possible.     

Perspectives and experiences of homeless young people

AIM: This paper reports a study describing the experiences and perspectives of homeless young people as research participants. BACKGROUND: Worldwide, homeless young people are an especially vulnerable group due to their age, socio-economic disadvantage, and stigmatized status, and can suffer from human rights abuses. Researchers and advocates have noted that we know relatively little about the effects of research participation on adolescents in general, and much less about marginalized adolescents such as homeless young people; nor do we know about their perceptions and experiences as research participants. There is a lack of studies reported to help guide the ethical conduct of research with homeless young people. METHODS: Individual interviews with 30 street and clinic-based homeless young people aged 15-23 years and two focus groups with a total of 13 additional homeless young people were conducted in a large West-coast city in the United States of America. The study took place between January and June 2003. Interviews and focus groups were tape-recorded, transcribed, preliminarily coded, with final coding crosschecked and verified with a second researcher. FINDINGS: The majority of young people reported positive experiences as research participants in the past. None reported coercive research experiences; however, many stated that they would have liked more information about how the data they provided would be used by the researchers. All participants reported that it was important to be provided with research incentives, and thought that small monetary or pre-paid phone cards were appropriate incentives. They did express concerns that larger research incentives could be coercive and harmful for some homeless young people. CONCLUSION: Researchers working with homeless young people should seek greater input from them on the overall design of the study, especially concerning the appropriate use of research incentives.     

Monitoring and oversight in critical care research

Institutionally based research ethics review is a form of peer review that has – for better or worse – become the norm throughout the world. The vast majority of research ethics review takes the form of protocol review alone, conducted in advance of the research. Although oversight and monitoring in clinical research have long been recognized as essential features of sound research ethics, they are seldom exercised in ways that fulfill their motivating goals: to ensure that research is conducted as planned; that research participants comprehend the information presented to them in the consent process; and that the potential benefits and risks of study participation remain acceptable. Annual review of continuing research, monitoring informed consent, monitoring adherence to approved protocols and monitoring integrity of research data comprise the main types of monitoring and oversight activity. We believe that our institutionally based systems of research ethics review and responsibility require greater engagement and participation from researchers and research administrators. The appropriate role of critical care researchers and research administrators is to provide leadership to move toward a greater recognition of the importance of monitoring and oversight for ethical and high quality clinical research.     

Without Parental Consent: Conducting Research With Homeless Adolescents

ISSUES AND PURPOSE. To identify the ethical and legal implications of conducting research with homeless adolescents and to discuss guidelines for conducting research without parental consent.
CONCLUSIONS. Ethical principles of capacity, risk, postponement, and truthful disclosure within the context of the rights of minors to consent to healthcare treatment form the basis of the argument for allowing adolescents to consent to participate in research without parental consent when there is minimal risk or when such consent could place them at increased risk for harm.
PRACTICE IMPLICATIONS. Adolescents who are the target population for clinical research or who are intended recipients of nursing care should be involved in setting priorities, purposes, and protocols. Parents and other adults from their communities should be included in developing strategies to protect their confidentiality and privacy while helping them achieve autonomy in making informed health-related decisions.     

How ethical is ethical research? Recruiting marginalized,vulnerable groups into health services research

Title. How ethical is ethical research? Recruiting marginalized, vulnerable groups into health services research. Aim. This paper is a discussion of how tensions in research ethics guidelines can have an impact on the recruitment of marginalized, vulnerable groups of people into health services research. Background. Research ethics guidelines in the United Kingdom (UK) predominantly reflect requirements for clinical trials and medical research but apply to all types of research conducted in the National Health Service. Guidelines emphasize the process of informed consent to protect individuals’ autonomy and rights, and avoid harm to vulnerable people. This focus, however, can result in the exclusion of and discrimination against marginalized groups at a time when user involvement in research and health service developments is increasingly emphasized in policy. Method. This paper is based on a critical reflection on tensions observed in current research ethics guidelines in the UK. These tensions became apparent following recruitment of nine postnatal drug‐using women to a qualitative phase of an evaluation in 2005 of a specialist health visitor service. Findings. The main ethical tensions identified concerned the sampling and recruitment of marginalized groups, which can affect the validity and reliability of research findings. Consideration needs to be given to sampling and accessing such groups and assessing the capacity of individuals to give informed consent. This is to avoid coercion and exploitation of vulnerable individuals and groups in research, increase validity and reliability, and avoid pre‐emptive exclusion of such groups in the research design. Conclusion. Ethical judgements and decisions about research can be contradictory and be influenced by competing paradigms. Use of the concept of ‘responsible advocacy’, with due consideration to the principles of autonomy, beneficence, non‐maleficence and justice, is recommended.     

Informed consent in emergency care research: An oxymoron?

Emergency care needs to be underpinned by the highest quality evidence. However, research involving critically ill patients in the emergency setting has unique ethical, logistical and regulatory issues. Informed consent is a well‐established principle in conventional research. In this article, we discuss informed consent as it pertains to the difficulties of research in the emergency setting. Alternatives to informed consent are discussed. Human research ethics committees require a greater understanding of consent issues in emergency care research for Australia to remain competitive internationally.     

Ethical dilemmas of a large national multi-centre study in Australia: time for some consistency

Aims and objectives. To examine the impact and obstacles that individual Institutional Research Ethics Committee (IRECs) had on a large‐scale national multi‐centre clinical audit called the National Benchmarks and Evidence‐based National Clinical guidelines for Heart failure management programmes Study. Background. Multi‐centre research is commonplace in the health care system. However, IRECs continue to fail to differentiate between research and quality audit projects. Methods. The National Benchmarks and Evidence‐based National Clinical guidelines for Heart failure management programmes study used an investigator‐developed questionnaire concerning a clinical audit for heart failure programmes throughout Australia. Ethical guidelines developed by the National governing body of health and medical research in Australia classified the National Benchmarks and Evidence‐based National Clinical guidelines for Heart failure management programmes Study as a low risk clinical audit not requiring ethical approval by IREC. Results. Fifteen of 27 IRECs stipulated that the research proposal undergo full ethical review. None of the IRECs acknowledged: national quality assurance guidelines and recommendations nor ethics approval from other IRECs. Twelve of the 15 IRECs used different ethics application forms. Variability in the type of amendments was prolific. Lack of uniformity in ethical review processes resulted in a six‐ to eight‐month delay in commencing the national study. Conclusions. Development of a national ethics application form with full ethical review by the first IREC and compulsory expedited review by subsequent IRECs would resolve issues raised in this paper. IRECs must change their ethics approval processes to one that enhances facilitation of multi‐centre research which is now normative process for health services. Relevance to clinical practice. The findings of this study highlight inconsistent ethical requirements between different IRECs. Also highlighted are the obstacles and delays that IRECs create when undertaking multi‐centre clinical audits. However, in our clinical practice it is vital that clinical audits are undertaken for evaluation purposes. The findings of this study raise awareness of inconsistent ethical processes and highlight the need for expedient ethical review for clinical audits.     

The ethics of research using electronic mail discussion groups

AIM: The aim of this paper is to identify and discuss the ethical considerations that have confronted and challenged the research team when researchers facilitate conversations using private electronic mail discussion lists. BACKGROUND:The use of electronic mail group conversations, as a collaborative data generation method, remains underdeveloped in nursing. Ethical challenges associated with this approach to data generation have only begun to be considered. As receipt of ethics approval for a study titled; 'Describing transition with people who live with chronic illness' we have been challenged by many ethical dilemmas, hence we believe it is timely to share the issues that have confronted the research team. These discussions are essential so we can understand the possibilities for research interaction, communication, and collaboration made possible by advanced information technologies. DISCUSSION: Our experiences in this study have increased our awareness for ongoing ethical discussions about privacy, confidentiality, consent, accountability and openness underpinning research with human participants when generating data using an electronic mail discussion group. We describe how we work at upholding these ethical principles focusing on informed consent, participant confidentiality and privacy, the participants as threats to themselves and one another, public-private confusion, employees with access, hackers and threats from the researchers. CONCLUSION: A variety of complex issues arise during cyberspace research that can make the application of traditional ethical standards troublesome. Communication in cyberspace alters the temporal, spatial and sensory components of human interaction, thereby challenging traditional ethical definitions and calling to question some basic assumptions about identity and ones right to keep aspects of it confidential. Nurse researchers are bound by human research ethics protocols; however, the nature of research by electronic mail generates moral issues as well as ethical concerns. Vigilance by researchers is required to ensure that data are viewed within the scope of the enabling ethics approval.     

Vulnerable populations and multicentred research

There are many challenges facing researchers with projects requiring multicentred ethics approval. Achieving ethical approval at multiple sites, whether statewide or nationally, is a complex and time‐consuming experience, compounded by the research process itself, as well as the recruitment of clinical sites and participants. Human ethics and research committees act as research gatekeepers and, as many research activities involve multiple applications and multiple approvals, can considerably delay the commencement of a project. A delay in ethics approval results in delays recruiting staff and participants, delays in the utilization of funding, and in delays regarding the progress and completion of projects. Such problems are additional problems for researchers of vulnerable populations, such as those in mental health or palliative care, where multicentred research is necessary to ensure the validity of the project itself. A current example of work that has required multicentred human ethics and research approval from around Australia is the establishment of the National Register of Antipsychotic Medication in Pregnancy. The guidelines for embarking on such a project with the requirement of multicentred ethical approval are described. Some of the issues, recommendations, and guidelines presented by the authors are taken from their experiences in establishing multicentred research projects.     

Issues of Informed Consent in Conducting Medical Research Involving People with Intellectual Disability

Background People with severe intellectual disability are considered vulnerable to exploitation in research. Discovery of exploitative practices in recent history has motivated the development of guidelines for informed consent and proxy decision‐making procedures when involving these individuals in research. Methods Issues for determining capability to provide informed consent and the proxy decision process are reviewed according to the literature, current ethics guidelines and recent legislature in Victoria, Australia. Results The complex process of involving in research people with severe intellectual disability who are particularly vulnerable by virtue of their institutionalized residential status is discussed within the context of a recent project into examining potential nutritional determinants of Pica behaviour (i.e. the eating of inedible items). Conclusions This example serves to highlight the role of legislation, various government bodies and researchers in balancing principles of protection of vulnerable groups and rights to self‐determination.     

Informed consent and truth-telling: cultural directions for healthcare providers

As the United States becomes more diverse in the healthcare beliefs and practices of its residents, delivery of culturally competent healthcare in an ethical manner becomes increasingly complex. Nurse administrators, who are responsible for interpreting policy and organizational expectations to their employees as well as ensuring that providers maintain the American Nurses Association's code of ethics, are challenged when providing care for diverse populations. Critical to providing culturally sensitive care is an understanding of different approaches to truth-telling. The authors present Korean, Southeast Asian, and First Nations (American Indian) case studies illustrating concepts of truth-telling and informed consent related to issues that arise when group-oriented persons or families respond to their health-care providers' actions.     

Healthcare experiences of the homeless

Purpose: To explore the healthcare experiences of homeless individuals and inform providers of the barriers created by the situation of homelessness.
Data sources: This was a qualitative research study using a grounded theory approach. The sample included homeless individuals older than 18 years living in northeastern Wisconsin.
Conclusions: This research provided rich insight into the healthcare experiences of the homeless. Five key conclusions were made: (a) the great majority of homeless people have an external locus of control; (b) most homeless individuals lack the necessary resources to meet their physical needs of shelter, air, water, and food; (c) most homeless individuals lack the financial resources to seek adequate health care; (d) access to resources is limited because of poor transportation, telephones, and mail; and (e) all those interviewed felt that healthcare providers lack compassion for the homeless.
Implications for practice: Healthcare providers can use the concepts discovered in this study to help improve their skills and comfort level when working with homeless individuals. A decrease in acute illnesses and an increase in the effective management of chronic disease resulting in fewer long-term complications and medical costs because of these unnecessary complications could be seen. Healthcare professionals may also volunteer to become more involved with the care of the homeless if they are confident in their skills. Improving the health of the homeless in the community will result in improvements in the overall health of the community.     

临床护理科研中的伦理学问题分析及对策

阐述了临床护理科研中涉及的伦理学问题,包括病人利益第一原则、知情同意原则、有利无害原则、公平公正原则。并提出要建立健全相关的伦理审查委员会,加强临床护理科研人员医学伦理学知识培训,更好地保护病人的权益。     

Past,Present, and Future of Informed Consent in Pain and Genomics Research: Challenges Facing Global Medical Community

In recent decades, there has been a revision of the role of institutional review boards with the intention of protecting human subjects from harm and exploitation in research. Informed consent aims to protect the subject by explaining all of the benefits and risks associated with a specific research project. To date, there has not been a review published analyzing issues of informed consent in research in the field of genetic/Omics in subjects with chronic pain, and the current review aims to fill that gap in the ethical aspects of such investigation. Despite the extensive discussion on ethical challenges unique to the field of genetic/Omics, this is the first attempt at addressing ethical challenges regarding Informed Consent Forms for pain research as the primary focus. We see this contribution as an important one, for while ethical issues are too often ignored in pain research in general, the numerous arising ethical issues that are unique to pain genetic/Omics suggest that researchers in the field need to pay even greater attention to the rights of subjects/patients. This article presents the work of the Ethic Committee of the Pain‐Omics Group ( www.painomics.eu ), a consortium of 11 centers that is running the Pain‐Omics project funded by the European Community in the 7th Framework Program theme (HEALTH.2013.2.2.1‐5—Understanding and controlling pain). The Ethic Committee is composed of 1 member of each group of the consortium as well as key opinion leaders in the field of ethics and pain more generally.     

Ethics of care in technology-mediated healthcare practices: A scoping review

Background

Introducing new technologies into healthcare practices may challenge professionals' traditional care cultures. The aim of this review was to map how the ‘ethics of care’ theoretical framework informs empirical studies of technology-mediated healthcare.

Method

A scoping review was performed using eight electronic databases: CINAHL with full text, Academic Search Premier, MEDLINE, the Philosopher's Index, SocINDEX with Full Text, SCOPUS, APA PsycInfo and Web of Science. This was followed by citation tracking, and articles were assessed against the inclusion criteria.

Results

Of the 443 initial articles, 18 met the criteria and were included. We found that nine of the articles used the concept of ‘ethics of care’ (herein used interchangeably with the terms ‘feminist ethics’ or ‘relational ethics’) insubstantially. The remaining nine articles deployed care ethics (or its equivalent) substantially as an integrated theoretical framework and analytical tool. We found that several articles suggested an expansion of ethics of care to encompass technologies as part of contemporary care. Furthermore, ethics of care contributed to the empirical research by recognising both new relationships between patients and healthcare professionals as well as new ethical challenges.

Conclusion

Ethics of care is sparsely used as a theoretical framework in empirical studies of technology-mediated healthcare practices. The use of ethics of care in technology-mediated care brings new dilemmas, relational tensions and vulnerabilities to the foreground. For ethics of care to be used more explicit in empirical studies, it is important that it is recognised by research community as an adequate, universal ethical theory.     

Reporting of ethical standards: Differences between complementary and orthodox medicine journals?

OBJECTIVES: This study aimed at assessing whether there are differences in the reporting of ethical aspects of complementary and alternative medicine (CAM) and mainstream medical research. DESIGN: Review of published literature. SETTING: Research department of medical school. MAIN OUTCOME MEASURES: Reports of ethical aspects including adherence to clinical guidelines, ethical approval from ethics committees, consent of the patient, declaration of conflict of interest, and declaration of funding for a study. RESULTS: We included 21 articles from CAM journals, as well as 16 from equal impact factor mainstream (EIF) journals and 27 from high impact factor (HIF) journals. A statistically significant difference was found in the reporting of ethical approval: 62% of all CAM articles, 75% of the EIF and 93% of the HIF journal articles reported approval from ethics committees [chi2 = (2, n = 64) 6.631, p<0.05]. Regarding the reporting of obtaining patients' consent there were no statistically significant differences: 48% of all CAM articles, 38% of the EIF mainstream and 67% of the HIF mainstream journal articles explicitly stated that patients signed a consent form [chi2 = (2, n = 64) 3.813, p>.05]. High impact factor journals were more likely to report on ethical standards than other journals on conflicts of interests and sponsorship. However, they were less likely to report a reference to ethical guidelines. Articles from CAM journals had more strict reporting requirements than mainstream medicine journals with comparable impact factors. CONCLUSIONS: Differences exist between complementary and orthodox medical journals in the reporting of ethical aspects of trial design.     

Ethical considerations in cardiovascular prevention

The fundamental values in medical ethics include the following aspects of professional conduct: (i) actions in the best interest of patients; (ii) first, do no harm; (iii) patients’ right to refuse or choose treatments; (iv) fairness and equality in the distribution of healthcare resources; and (v) truthfulness and honesty (informed consent). These values have to be considered in all diagnostic steps and therapeutic decisions. They should also form the basis for discussions of potential conflicts of interest among patients, doctors, healthcare financers and politicians. Cardiovascular (CV) diseases represent the most frequent cause of death and a major healthcare problem in most regions of the world. CV prevention is therefore an important task both in individual subjects and as a means to improve health in the general population. While the merits of treatment in patients with established CV diseases, i.e. secondary prevention, are widely accepted and regarded as necessary, primary prevention with drugs in apparently healthy individuals at an increased risk of future CV events is not free of controversies. The different types of prevention envisaged also give rise to ethical questions: Should all the growing number of classical and newly recognised CV risk markers be a reason for intervention or should they be preferably used for calculating a total risk score? What are the compelling or only relative indications for anti‐hypertensive, cholesterol‐lowering, anti‐diabetic or platelet‐inhibiting drugs? Are pre‐hypertension, pre‐diabetes and marginally elevated cholesterol levels early diseases justifying drug treatment, regardless of the possibility that some prophylactic interventions may be associated with adverse events? Discussions also often arise concerning the role of age, gender and of non‐CV co‐morbidities for decisions about long‐term prevention with drugs. How reliable and applicable are ‘evidence‐based’ guidelines derived from trials in highly selected patients and healthy subjects for the general population seen in everyday practice? Increasingly, the economic aspects of long‐term prevention and problems of a fair allocation of limited healthcare resources are also important issues giving rise to contrasting views among patients, doctors, insurance providers and politicians. What are the priorities and who should decide? Ethical considerations relating to the above questions in CV prevention are discussed in this article.     

Ethics in Qualitative Research

Purpose: To critically examine ethical issues in qualitative research.
Organizing Construct: The ethical principles of autonomy, beneficence, and justice are guides for researchers to address initial and ongoing tensions between the needs and goals of the research and the rights of participants.
Methods: Research literature, ethics literature, and researcher experiences.
Conclusions: Ethical principles can be used to guide the research in addressing the initial and ongoing issues arising from qualitative research in order to meet the goals of the research as well as to maintain the rights of the research participants.     

Essentials of research ethics for healthcare professionals

Abstract Whether conducted in a university or the healthcare field, research with human subjects gives rise to a multitude of ethical questions for healthcare professionals. While engaging in ongoing professional development on how to conduct research ethically, both clinicians and scientists need to expand their knowledge to provide answers to the following questions: Which ethical theories serve as a foundation for ethical principles in research ethics? What ethical principles should a researcher respect when conducting research with human subjects? What does it mean to conduct research ethically? What ethical dilemmas are encountered by a researcher in conducting research? This paper provides a review of ethical theories, and the ethical basis of guidelines developed and used to guide human subject research. Ethical behaviors and the personal responsibility of the researcher conducting research with human subjects are discussed along with the ethical considerations in research designs and methods.