Ethical Issues In Research Research Articles

Reporting on the Issues of Research Rigour and Ethics: The Case of Publications Using Qualitative Methods in the Croatian Social Science Journals

This paper discusses the issues of research rigour and ethics in the qualitative research on the case of studies published in the Croatian social science journals. The author discusses the qualitative research applications of the concepts of generalizability, validity and reliability and the relevance of the ethical considerations in the qualitative research, and examines the conventions of reporting on these issues in the Croatian social science journals. For these purposes, the author examined articles using qualitative methods in which the researcher interacted with the research participants (in-depth interviews, focus groups interviews, observation) published in 2000–2009 in seven Croatian journals indexed in the International Bibliography of Social Sciences (IBSS) and/or Social Sciences Citation Index (SSCI). The results testify to the underdeveloped conventions of reporting on the ethical issues, which are further reinforced by the weak institutional accountability in the domain of ethics regulations. Furthermore, the misconception about the lack of research rigour in qualitative studies is often responsible for the accusations of these studies being “less scientific”. But, just the opposite, good qualitative studies require stricter regimes of researcher accountability in terms of her/his research decisions and procedures. However, the reports on the research steps and the discussions of generalizability, validity and reliability, as adapted to the nature of the qualitative studies, are mostly missing from the Croatian publications using qualitative methods. This reinforces the misconceptions about the qualitative studies and disables the discerning reader from evaluating the credibility and legitimacy of the qualitative studies’ results.

Challenging Anthropocentricism in Social Work Through Ethics and Spirituality: Lessons from Studies in Human-Animal Bonds

During the process of teaching theoretical foundations in a Canadian school of social work, I sought to combine my teaching of critical anti-oppressive practice (AOP) with established ideas from the field of human-animal bonds (HAB) and from the spiritual experiences arising within my relationships to companion animals. This article addresses the challenges I confronted by identifying speciesism, a specific form of discrimination based on species not recognized within social work's anti-oppressive practice paradigm. I argue that anti-oppressive social work is, in effect, oppressive because it informs a perspective that prioritizes humans over other animals, nature, and the planet. By drawing on the extensive body of literature in the field of HAB, which like AOP is informed by critical social theories, this article highlights how an AOP approach is delimited to diversity among humans. The implication of anthropocentrism as the central organizing principle of AOP social work is that it limits the profession's value framework and the potential for sustainable outcomes for well-being among all beings. Pathways to address these implications are offered by reference to work that explores issues of spirituality and ethics in both social work and HAB research.

Untapped ethical resources for neurodegeneration research

BackgroundThe research community has a mandate to discover effective treatments for neurodegenerative disorders. The ethics landscape surrounding this mandate is in a constant state of flux, and ongoing challenges place ever greater demands on investigators to be accountable to the public and to answer questions about the implications of their work for health care, society, and policy.MethodsWe surveyed US-based investigators involved in neurodegenerative diseases research about how they value ethics-related issues, what motivates them to give consideration to those issues, and the barriers to doing so. Using the NIH CRISP database we identified 1,034 researchers with relevant, active grants and invited them to complete an online questionnaire. We received 193 responses. We used exploratory factor analysis to transform individual survey questions into a smaller set of factors, and linear regression to understand the effect of key variables of interest on the factor scores.ResultsEthics-related issues clustered into two groups: research ethics and external influences. Heads of research groups viewed issues of research ethics to be more important than the other respondents. Concern about external influences was related to overall interest in ethics. Motivators clustered into five groups: ensuring public understanding, external forces, requirements, values, and press and public. Heads of research groups were more motivated to ensure public understanding of research than the other respondents. Barriers clustered into four groups: lack of resources, administrative burden, relevance to the research, and lack of interest. Perceived lack of ethics resources was a particular barrier for investigators working in drug discovery.ConclusionsThe data suggest that senior level neuroscientists working in the field of neurodegeneration (ND), and drug discovery specifically, are motivated to consider ethics issues related to their work, but the perceived lack of ethics resources thwarts their efforts. With bioethics centres at more than 50% of the institutions at which these respondents reside, the neuroscience and bioethics communities appear to be disconnected. Dedicated ethical, legal and social implications (ELSI) programs, such as those fully integrated into genetics and regenerative medicine, provide models for achieving meaningful partnerships not yet adequately realized for scholars and trainees interested in drug discovery for ND.

Med nätet som fält

Writing ethnography involves retelling a story and carrying the voices of others in order to describe and explain a cultural phenomenon. This article argues that the ethnographer cannot write in such a close manner without great difficulties when today's search engines operade with unprecedented vigour. Tracing a text string using Google takes less than a second and this has great implications for the ability to provide quotations if the researcher is to follow ethical guidelines to protect and to keep their informants anonymous. Further, this article discusses ethical implications involved in online studies of blogs where the content is of a sensitive and private nature. To undertake such research while showing respect for the informant is a challenging task, given the researcher's need to adhere to the key issues in research ethics. This article specifically problematizes the ethics of informed consent and confidentiality as it provides a particular challenge for the researcher engaged in studies of affective online sharing.

Ethical, legal and social issues related to alcohol and drug research

To present some highlights and comments about ethical, legal and social issues related to alcohol and drug research. Alcohol and drug research has a lack of scientific production related to ethical, legal and social issues. Many papers simply describe summarily the informed consent process and other related issues. Informed consent process is one of the most important issues in research ethics. Obtaining a valid consent from a prospective research participant is always a challenge. We present many different ways to reach ethical, legal and social adequacy related to the informed consent process.

Ethics and Human Experimentation

Oregon Anesthesiology Group, McKenzie-Willamette Medical Center, Springfield, Oregon. susan.palmer@comcast.netAlthough I thank Dr. Butterworth for his comments concerning my commentary,1I do not agree with his opinion that US medical researchers consistently obtained informed consent from human subjects before the 1980s. The Nuremburg Code (1947), the Declaration of Helsinki (1964), and Beecher (1966)2describe research without consent from human subjects and were all published before the 1980s. However, printed copies of these documents were not readily available to US physicians. Until the 1980s, even fewer physicians thought that the Nuremburg Code or Helsinki Declaration had much to do with medical research or clinical practice within the United States.The Nuremburg Code was composed subsequent to the conviction of Nazi physicians who defended their horrific research, claiming it was similar to medical research being done all over the world.3That code stated as its very first basic principle that human experimentation should involve the “voluntary consent of the subject.”The World Medical Assembly meeting in Helsinki published what became known as the Declaration of Helsinki. It contained 22 “basic principles” for guiding human subject research. The Declaration was later revised in 1975 and 1983.The medical community did not develop sanctions for researchers who disregarded the Nuremburg Code or the Helsinki Declaration.Beecher's2comments in the New England Journal of Medicine were not welcomed by some in the medical research community because prominent researchers thought his ideas about obtaining informed consent from human subjects would stifle medical research. His article was originally refused publication in JAMA 4and the New England Journal of Medicine agreed to publish it only after more than half of the cases he described were removed.I agree with Butterworth that Beecher—along with many of his distinguished anesthesiologist colleagues—rightly deserves a place of honor in the development of the understanding of clinical research ethics. However, I certainly did not know specifically of Beecher's New England Journal of Medicine article2when I started doing human subject research in 1976. It was not until I took the time and effort to research ethical issues in anesthesiology practice that I began to understand the development of medical ethics in the United States.The medical literature of the 1970s is, unfortunately, replete with clinical studies that did not meet the standards of the Declaration of Helsinki.5Even today, many physicians do not value the study of medical ethics because they do not believe it is an academic discipline. Many surgeons believed that consent was not routinely required and that medical ethics was a waste of time that served only to “raise doubts where there were none before.”6Multidisciplinary panels that composed Federal regulations for human research had more ethicists and members of the public than physicians because US society wanted consistent treatment of human subjects of research.The community of professional physicians failed to agree on required elements of consent or enforce consistency in obtaining patient consent. Beecher2himself stated that achieving truly “informed consent” was probably not possible. He acknowledged the pressure on researchers to publish combined and an explosion of research funds to coerce researchers to proceed without trying too hard to fully inform research subjects.2Federal standards were defined in the late 1970s, published in 1981, and enforced thereafter. They defined the requirements for informed consent for research subjects, which, until that time, were pretty much up to individual researchers—some of whom had more defensibly ethical practices than others.Oregon Anesthesiology Group, McKenzie-Willamette Medical Center, Springfield, Oregon. susan.palmer@comcast.net

AMA Code of Medical Ethics' Opinion on Population-Based Genomic Research

Opinion 2.079 - Safeguards in the Use of DNA Databanks in Genomic Research The following safeguards should be applied to the use of databases for the purpose of population-based genomic research: (1) Physicians who participate as investigators in genomic research should have adequate training in genomic research and related ethical issues so as to be able to discuss these issues with patients and/or potential research subjects.

Placeboxetine for major depressive disorder: Researcher, author, reader, and reviewer perspectives on randomized controlled trials

Background:Postgraduate students, budding authors, clinicians who read journals, and new reviewers need to develop skills in reading, writing, and reviewing papers that describe randomized controlled trials (RCTs).Materials and Methods:This commentary critically examines a specially-written paper (published in the same issue of this journal) that describes a fictitious, industry-driven, multicentre RCT comparing the fictitious antidepressant placeboxetine with sertraline in Indian patients with major depressive disorder. Readers are invited to independently assess the RCT paper before they continue with this commentary.Results:Scientific aspects of the design and execution of the RCT are examined in the context of ethical issues in research. Comments and suggestions are offered on issues such as the statistical handling of data, manuscript content, and manuscript writing style. The reader's attention is drawn to subtle and not-so-subtle errors, as well as to curiosities in the data.Conclusions:It is hoped that this practical commentary on research design, execution, analysis, and reporting, based on specific examples, will benefit researchers, authors, readers, and reviewers more than guidance delivered in the form of general advice.

Ética e justiça nas pesquisas sediadas em comunidades: o caso de uma pesquisa ecossistêmica na Amazônia

A partir dos anos 1970, os metodos de pesquisa participativa sediada em comunidades ganharam pouco a pouco credito no campo das pesquisas aplicadas, ocasionando mutacoes epistemicas e eticas nas praticas de pesquisa com participantes humanos. Este artigo apoia-se sobre um exemplo de pesquisa ecossistemica em saude ambiental, conduzida em parceria entre pesquisadores universitarios (Canada e Brasil) e habitantes das margens de um rio da Amazonia brasileira, o Tapajos. Esse exemplo ilustra as tensoes que afetam o quadro conceitual no qual sao habitualmente colocadas as questoes de etica da pesquisa com participantes humanos, principalmente os principios cardeais retirados do relatorio Belmont, e muito particularmente aqueles de beneficencia e de justica. Esse genero de pratica cientifica implica um desdobramento da responsabilidade dos pesquisadores, entre a pesquisa e a acao.

Attitudes toward Genetic Research Review: Results from a Survey of Human Genetics Researchers

Background: Researchers often relate personal experiences of difficulties and challenges with Institutional Review Board (IRB) review of their human genetic research protocols. However, there have been no studies that document the range and frequency of these concerns among researchers conducting human genetic/genomic studies. Methods: An online anonymous survey was used to collect information from human genetic researchers regarding views about IRB review of genetic protocols. Logistic regression was used to test specific hypotheses. Results from the national online survey of 351 human genomic researchers are summarized in this report. Results: Issues involving considerable discussion with IRBs included reconsent of subjects (51%), protection of participants’ personal information (39%) and return of results to participants (34%). Over half of the participants had experienced one or more negative consequences of the IRB review process and approximately 25% had experienced one or more positive consequences. Respondents who had served on an IRB were about 80% more likely to report positive consequences of IRB review than their colleagues who had never served on an IRB (p = 0.03). Survey responses were mixed on the need for reconsent before data sharing and risks related to participant reidentification from genomic data. Conclusion: The results from this study provide important perspectives of researchers regarding genetic research review and show lack of consensus on key research ethics issues in genomic research.

The ethical issues of research involving human beings contained in the editorial guidelines of Brazilian medical journals

The present study aimed to analyze the ethical aspects contained in the sections “Instructions to authors” of Brazilian medical journals which were highly qualified on the assessment of the Qualis program of Conselho Técnico Científico da Educação Superior (CTC-ES) (Medicine I area - reference year 2007). Moreover, we searched in the journals that present information about the ethical issues involved in research with humans, if these journals inform the authors about how they should confirm to the editors the compliance with ethical issues of their studies. The editorial guidelines of 34 journals (17.6%, B2 score; 35.3% B3 score; 47.1% B4 score) were analyzed. It was observed that only 7 (20.6%) journals do no mention some ethical questions related to research involving human subjects and that 25 (73.5%) journals indicate the need for approval of research by Ethics Committee of the institution where the study was conducted. However, less than half (44.1%) of the journals clearly indicate in their “Instructions to authors” that information about the ethical aspects of research involving human subjects should be cited in the text of the manuscript submitted. Thus, further improvement is still necessary regarding the approach of ethical issues in the editorial guidelines of the Brazilian medical journals analyzed. Researches like this seek to contribute with the discussion about the awareness of editors, so that they mention in the instructions of their journals the principles, rules and ethical standards that must be considered in the research involving human beings.

Ethical issues in research and publication of illicit cultural property

There is much discussion in conservation, if it is ethical for conservators to ‘touch’ illicit antiquities. One of the problems in studying unprovenanced archaeological objects is their publication. Many archaeologists believe that they should never publish or cite in print unprovenanced antiquities, because it indirectly supports illicit trafficking of antiquity. Some museum professionals believe that conservators’ technical and/or scientific study of such material helps to fight against criminal activity by identifying fakes and forgers. Whatever the belief, research and publication in conservation currently do not provide ethical reviews when studies involve such problematic material in order to ensure scientific integrity of the results. The paper presents case studies where ethical standards may have needed to be considered and discusses the complexity involved in authentication studies of such antiquities. The paper concludes that a standard should be drafted on ethics in research and scientific publication of cultural property similar to the biomedical field, which warns when papers deal with human and animals testing.

The Role, Remit and Function of the Research Ethics Committee — 4. Limits to Consent?

This is the fourth in a series of five papers on the role, remit and function of research ethics committees which are intended to provide for REC members a broad understanding of the most important issues in research ethics and governance. This paper explores the role of ethics committees in reviewing proposed conditions for recruiting human subjects and in checking the intended procedures for gaining consent. In so doing the paper will reiterate the conditions which are traditionally thought to make consent valid, identify a number of limitations to meeting these conditions, and show when consent, however broadly construed or indeterminately focused, may be unnecessary.

Ethical brain stimulation – neuroethics of deep brain stimulation in research and clinical practice

Deep brain stimulation (DBS) is a clinically established procedure for treating severe motor symptoms in patients suffering from end-stage Parkinson's disease, dystonia and essential tremor. Currently, it is tested for further indications including psychiatric disorders like major depression and a variety of other diseases. However, ethical issues of DBS demand continuing discussion. Analysing neuroethical and clinical literature, five major topics concerning the ethics of DBS in clinical practice were identified: thorough examination and weighing of risks and benefits; selecting patients fairly; protecting the health of children in paediatric DBS; special issues concerning patients' autonomy; and the normative impact of quality of life measurements. In exploring DBS for further applications, additionally, issues of research ethics have to be considered. Of special importance in this context are questions such as what additional value is generated by the research, how to realise scientific validity, which patients should be included, and how to achieve an acceptable risk-benefit ratio. Patients' benefit is central for ethical evaluation. This criterion can outweigh very serious side-effects, and can make DBS appropriate even in paediatrics. Because standard test procedures evade central aspects of patients' benefits, measuring quality of life should be supplemented by open in-depth interviews to provide a more adequate picture of patients' post-surgical situation. To examine its entire therapeutic potential, further research in DBS is needed. Studies should be based on solid scientific hypotheses and proceed cautiously to benefit severely suffering patients without putting them to undue risks.

The Role, Remit and Function of the Research Ethics Committee — 3. Balancing Potential Social Benefits against Risks to Subjects

This is the third in a series of five papers on the role, remit and function of research ethics committees which are intended to provide for REC members a broad understanding of the most important issues in research ethics and governance. This paper examines the role of ethics committees in balancing the social value of the research it reviews against the risks it imposes on those who take part. The ethics committee's role in assessing the social value of research goes well beyond checking its scientific validity and this assessment may affect the risks ethics committees are prepared to ask of subjects not only for their own potential personal interests but importantly and inevitably in the name of science. However, their function is importantly restricted by the wider regulatory and governance environment in which they work.

The Role, Remit and Function of the Research Ethics Committee — 2. Science and Society: The Scope of Ethics Review

This is the second in a series of five papers on the role, remit and function of research ethics committees which are intended to provide for REC members a broad understanding of the most important issues in research ethics and governance. This paper examines the role of ethics committees in assessing the science of the research it reviews. While ethics committees are not specifically constituted to review the science of a project, they must nevertheless assess the social benefits of research and, in this context, have an important role in checking that the science has been properly peer-reviewed.

Addressing conflicts in research ethics: consent and risk of harm

This paper explores some ethical conflicts that may arise in physiotherapy-related research, focusing particularly on the issues of informed consent and avoidance of harm. These central issues in research ethics are defined and related to fundamental moral principles such as respect for autonomy, respect for persons and non-maleficence, and their implications are examined through a set of hypothetical case studies, encompassing both quantitative and qualitative research approaches. It is argued that these ethical requirements may legitimately be traded off against each other, so that a prima facie need to gain informed consent or to avoid a risk of harm to participants may - within certain limits - be outweighed by other ethical requirements.

Conducting research in the aftermath of disasters: ethical considerations

Disaster research focuses on the impact disasters have on people and social structures. Planning for and responding to disasters require evidence to guide decision-makers. The need for such evidence provides an ethical mandate for the conduct of sound disaster research. Disaster research ethics draws attention to ethical issues common to all research involving human subjects. However, disaster research involves a number of distinctive factors, including the degree of devastation affecting participants and the urgency often involved in initiating research projects. Such factors generate ethical issues not usually encountered with other types of research, and create tensions that must be taken into account in designing and conducting disaster research so that it attains the highest ethical standards. An overview of general research ethics issues is presented here in the context of disaster research. As with all research involving humans, protection of participants and minimizing harm is the highest ethical priority. Other ethical issues include formal ethical approval, informed consent, balancing burdens and benefits, participant recruitment, coercion, the role of compensation, and conflicts of interest. Using examples from specific studies, some of the distinctive features of disaster research ethics are discussed. These include cross-cultural collaboration and communication, vulnerability of participants arising from the degree of devastation, avoiding exploitation of disaster victims, and protecting researchers. The article concludes with some of the major challenges facing disaster research ethics and how they might be addressed.

Contributions of Canadian community psychology.

The contributions of Canadian community psychologists to ethics, theory, methodology, research, and practise are highlighted in this article. Important debates about ethical issues in psychological research and practise have been advanced by Canadian community psychologists. Canadian community psychologists have also introduced theoretical perspectives (e.g., cognitive community psychology) that have provided an impetus for research and practise, and they have broadened the focus of research in community settings with contributions to participatory action research, program evaluation, and qualitative methods. A variety of substantive contributions have been made to the research literature, especially in the areas of community mental health, prevention, and social inclusion. Finally, Canadian community psychologists have contributed to practise in terms of policy, programs, and social interventions. The article concludes with a discussion of future potential areas of contribution for Canadian community psychology. Keywords: community, mental health, evaluation, prevention, action Contemporary Canadian community psychologists have made important contributions to psychology and the public good since the formation of the Canadian Psychological Association (CPA) Section on Community Psychology in 1982 (Nelson, Lavoie, & Mitchell, 2007). Yet, as Walsh-Bowers (1998) observed, the contributions of Canadian community psychology receive little to no acknowledgement in reviews of psychology in Canada. Adding to the invisibility of community psychology in Canada is the fact that Canadian community psychologists tend to publish their work in the two U.S. community psychology journals (American Journal of Community Psychology [AJCP] and Journal of Community Psychology [JCP]) and the Canadian Journal of Community Mental Health ([CJCMH]; Fortin-Pellerin, Pouliot-Lapointe, Thibodeau, & Gagne, 2006), to which they have contributed substantially as editors and authors. Moreover, much of the Canadian community psychology theory and research originating in Quebec is published in French, which limits its diffusion to English speakers. The purpose of this article is to raise the visibility of Canadian community psychology amongst the broader Canadian psychological community by highlighting some of the major contributions of Canadian community psychology. Historically, community psychology in Canada, the United States, and many other parts of the world grew out of clinical psychology and community mental health (Nelson et al., 2007). Dissatisfied with an individualistic, deficit-based, treatmentoriented approach to theory and practise, community psychology strived to develop a more ecological, strengths-based, prevention-focused approach. Born in the 1960s, community psychology also emphasises social change to promote well-being and a more just world, especially for people who are disadvantaged by virtue of poverty, race, and other forms of social exclusion. To identify the contributions of Canadian community psychology, we began by identifying Canadian community psychologists who had published their work in Canadian Psychology, CJCMH, AJCP, or JCP. We then sorted the areas of contribution into five broad areas: values and ethics, theory, methodology, research, and practise. It is common in applied psychology to consider the domains of theory, research, and practise, and this approach seemed to fit the contributions of community psychology fairly well. However, we decided to break the research area down into methodology and substantive areas of research, as we believed it was important to capture some of the unique methodological approaches that have become widespread in community psychology. Finally, we decided to add the area of values and ethics, as values have long been a central focus for community psychology (Rappaport, 1977), and Canadian community psychologists have made important contributions to values and the examination of ethical issues in research and practise. …

Aspectos éticos e estratégias para a participação voluntária da criança em pesquisa

A literatura de saúde tem abordado os aspectos éticos da investigação com seres humanos há décadas, mas ainda há desafios a serem reconhecidos e superados, tais como os referentes à pesquisa com crianças. Este artigo apresenta e discute aspectos éticos da pesquisa com crianças. Descreve estratégias de abordagem conformes às necessidades infantis, segundo seu processo de desenvolvimento e características individuais, para garantir a participação voluntária da criança na pesquisa.