scholarly journals Hazy Boundaries: Virtual Communities and Research Ethics

2016 ◽  
Vol 4 (4) ◽  
pp. 86-96 ◽  
Author(s):  
Helena Kantanen ◽  
Jyri Manninen

This paper examines ethical issues specific to research into virtual communities. Drawing on an empirical case with online forums of education experts, we identify the following key issues: publicity versus privacy of the community; the definition of human subjects research; participant recruitment; informed consent; and ethical questions associated with observing virtual communities, and with reporting and disseminating research results. We maintain that different research cultures in different countries can present challenges when studying global forums. Acknowledging the ephemeral characteristics of Internet contexts, this paper argues that ethical considerations should be more case-based, instead of relying on one model for all solutions. We suggest that local ethics committees or institutional review boards could, with their expert knowledge of ethics, provide valuable support for researchers operating in the complex and dynamic terrain of Internet research, as well as in fields and research settings where an ethical review is not a standard part of the research process.

2021 ◽  
pp. 174701612110227
Author(s):  
Christine Hine

There has been considerable debate around the ethical issues raised by data-driven technologies such as artificial intelligence. Ethical principles for the field have focused on the need to ensure that such technologies are used for good rather than harm, that they enshrine principles of social justice and fairness, that they protect privacy, respect human autonomy and are open to scrutiny. While development of such principles is well advanced, there is as yet little consensus on the mechanisms appropriate for ethical governance in this field. This paper examines the prospects for the university ethics committee to undertake effective review of research conducted on data-driven technologies in the university context. Challenges identified include: the relatively narrow focus of university-based ethical review on the human subjects research process and lack of capacity to anticipate downstream impacts; the difficulties of accommodating the complex interplay of academic and commercial interests in the field; and the need to ensure appropriate expertise from both specialists and lay voices. Overall, the challenges identified sharpen appreciation of the need to encourage a joined-up and effective system of ethical governance that fosters an ethical culture rather than replacing ethical reflection with bureaucracy.


2005 ◽  
Vol 1 (1) ◽  
pp. 5-11 ◽  
Author(s):  
Anthea Tinker ◽  
Vera Coomber

As society becomes more aware of the rights of individuals, ethical issues become of increasing importance. Many research funders, including the research councils, increasingly emphasise research governance and ethical review in their consideration of submitted proposals. Little is known, however, about what universities do over ethical scrutiny and in order to find out the authors undertook a national study of all universities in the United Kingdom. The focus of the study was on human volunteers for research outside the remit of the National Health Service. The key questions being: to what extent do universities undertake ethical scrutiny of research and, if so, how? The broad conclusion is that when this survey was carried out in the autumn of 2003, the majority of universities were aware of the need for the ethical scrutiny of research on human subjects although in many of those universities the scrutiny system was being developed at the time of completion of the questionnaire. In some cases practice appeared to lag behind awareness and whilst there were some very good examples there were also some which were below an ‘acceptable’ standard. Recommendations are made concerning structures, coverage and membership for systems of ethical scrutiny within the university sector.


2021 ◽  
Author(s):  
Reetika Khera

Questions of ethics in Randomized Controlled Trials (RCTs) in development economics need greater attention and a wider perspective. RCTs are meant to be governed by the three principles laid out in the Belmont Report, but often violated them, e.g. when local laws are flouted. In other cases, the framework of the Belmont Report itself has proved inadequate: for instance, when there are unintended outcomes or adverse events for which no-one is held accountable. Primarily using RCTs conducted in India, this paper highlights eight areas of concern. RCTs also have a disproportionate influence on shaping research agendas and on policy. Though ethical issues have been raised, there has been little engagement from the RCT community – a manifestation of its power in the profession. As current safeguards (such as oversight by Institutional Review Boards) have failed to protect human subjects, the concluding section discusses possible ways to resolve these issues.


Author(s):  
Alireza Bagheri

This chapter elaborates on some of the existing concerns and ethical issues that may arise when biomedical research protocols are proposed or funded by research institutes (private or public) in developed countries but human subjects are recruited from resource-poor countries. Over the last two decades, clinical research conducted by sponsors and researchers from developed countries to be carried out in developing countries has increased dramatically. The article examines the situations in which vulnerable populations in developing countries are likely to be exploited and/or there is no guarantee of any benefit from the research product, if proven successful, to the local community. By examining the structure and functions of ethics committees in developing countries, the article focuses on the issues which a local ethics committee should take into account when reviewing externally-sponsored research. In conclusion, by emphasizing capacity building for local research ethics committees, the article suggests that assigning the national ethics committee (if one exists) or an ethics committee specifically charged with the task of reviewing externally-sponsored proposals would bring better results in protecting human subjects as well as ensuring benefit-sharing with the local community.


2005 ◽  
Vol 11 (3) ◽  
pp. 101
Author(s):  
Emily Mauldon

This article discusses problems a research team had managing their ethical obligations during a short project, and considers the implications of these problems for better understanding and carrying out ethical research in the future. Two key points will be proposed. Initially, it will be argued that the culture of ethical research as articulated within the research community may not be universally accepted within the primary health care sector. The nature of "ethical conduct" within clinical practice, service provision and research is not the same. Further, practical difficulties the researchers experienced while trying to gain approval from ethics committees and implement the proposed research plan highlight some ways in which institutional ethical review processes are structurally unsuited to the requirements of small collaborative projects. Understanding the different ways in which the term "ethics" is used will allow for a more expedient translation of concepts between different health professionals. Recognising the practical constraints ethical review places on the research process may help reduce some of the frustration primary health care professionals can experience when faced with the requirements of research ethics committees. Due to the history of, and cultural commitment to, ethical research within the university sector, those with formal academic training in research are well placed to assume responsibility for managing the ethics process when involved in cross-sectoral research. This responsibility may include the need to educate team members and study participants about the importance of research ethics.


Management ◽  
2013 ◽  
Author(s):  
Edward Wray-Bliss

When compared to a number of other areas of the social sciences—sociology and anthropology being perhaps the best examples—discussions and debates around research ethics in the field of management are quite limited, both in number and scope. This is likely the consequence of a number of interrelated factors. It may speak to issues of the constitution of management faculty, the frequent separation of the business school from other parts of the university, or the historic construction of what is considered to be the role of the business school and management research in society. For whatever other reasons it has occurred, one of the factors must be the relatively homogenous nature of the field of management and organization studies—a field dominated by positivist research and a broadly functionalist, managerial orientation. In any field of inquiry largely constituted by conventional epistemological and ontological approaches, assumptions about “normal science” emerge and the impetus to question and debate, or indeed to defend, the ethics of normalized research practices is diminished. For many, the field of research ethics in management remains a formal process of compliance, requiring little discussion or reflection; it is a process of following a predefined code and satisfying the ethical review committee or institutional review board of one’s institution. Understood thus, ethics in management research is seen as something akin to a hurdle to be overcome by requisite form filling at the start of a research project. This is a limited—and limiting—understanding of ethical issues in management research. As the contributions cited in this bibliography attest, issues of ethics span the entire research process—from conception, through execution, to publication, and beyond. Assumptions regarding the purpose and value of research constitute an ethical warrant, legitimizing the very conduct of research in the first place. Additionally, the constitution of the management academy itself and its process of publication, citation, and review raises a number of ethical issues and concerns. Finally, management scholarship that draws on explicitly critical theoretical traditions and nonpositivist or antipositivist research approaches has heightened the questioning of conventional research practices and assumptions—generating critiques and some defenses of research ethics in management. This article maps out a significant proportion of the work and resources in the management academy that engage with such issues and debates.


Author(s):  
Michelle McCarron

Ethics in Qualitative Research (Miller, Birch Mauthner, & Jessop, 2012), now in its second edition, uses a feminist framework to present a variety of issues pertinent to qualitative researchers. Topics include traditional challenges for qualitative researchers (e.g., access to potential participants, informed consent, overlapping roles), as well as those that have garnered more attention in recent years, particularly with regard to uses and consequences of technological advances in research. The book is critical of committees whose function it is to review proposed research and grant research ethics approval (e.g., University Research Ethics Committees [URECs], Research Ethics Boards [REBs], and Institutional Review Boards [IRBs]). The authors of this book are situated within the United Kingdom. The editors take the position that ethics oversight by the researchers themselves is preferable and that such boards and committees are not well equipped to review qualitative research. A rebuttal to this position is presented within this review. Ethics in Qualitative Research provides a good overview of ethical issues that researchers face and is effective in merging theory with practice. It would be strengthened by avoiding the debate over URECs or by offering concrete suggestions for how URECs can improve their reviews of qualitative research.


Author(s):  
Crystal Kwan ◽  
Christine Walsh

Community-based participatory research (CBPR) is a methodology increasingly used within the social sciences. CBPR is an umbrella term that encompasses a variety of research methodologies, including participatory research, participatory action research, feminist participatory research, action research, and collaborative inquiry. At its core, they share five key attributes: (i) community as a unit of identity; (ii) an approach for the vulnerable and marginalized; (iii) collaboration and equal partnership throughout the entire research process; (iv) an emergent, flexible, and iterative process; and (v) the research process is geared toward social action. While there is no shortage of literature that highlights the benefits and potential of CBPR, relatively little discussion exists on the ethical issues associated with the methodology. In particular, current gaps within the literature include ethical guidance in (i) balancing community values, needs, and identity with those of the individual; (ii) negotiating power dynamics and relationships; (iii) working with stigmatized populations; (iv) negotiating conflicting ethical requirements and expectations from Institutional Review Boards (IRBs); and (v) facilitating social action emerging from the findings. For CBPR’s commendable goals and potential to be realized, it is necessary to have a more fulsome discussion of the ethical issues encountered while implementing a CBPR study. Further, a lack of awareness and critical reflection on such ethical considerations may perpetuate the very same problems this methodology seeks to address, namely, inequality, oppression, and marginalization. The purpose of this article is to provide a narrative review of the literature that identifies ethical issues that may arise from conducting CBPR studies, and the recommendations by researchers to mitigate such challenges.


2011 ◽  
Vol 26 (S1) ◽  
pp. s33-s34
Author(s):  
G.M.A. Hussein

A crisis has been evolving in the region of Darfur following an armed conflict between rebel groups and the assumingly government-supported militia in 2003. It has attracted international attention and intervention where 13 UN agencies and around 100 national and international non-governmental organizations have been serving the affected populations. Research as methodological means of data collection is crucial to timely assessment of the affected populations' needs before humanitarian interventions, raising fund to fulfil these needs, and to assess the effects of the humanitarian aids that have been delivered. However, the factors of (1) insecurity; (2) limited resources; (3) vulnerability of the population; and (4) the potential cultural and moral differences among researchers and the surveyed populations make the research process methodologically and ethically challenging. The aim of this paper is to present the effects of these factors on the ethical review and implementation of research, with emphasis on the issues of benefit-risk analysis, conflict of interests, and informed consent. A practical framework for the ethical review that responds to the need of timely provision of information as well as promoting the adherence to the international ethical principles also will be provided.


2020 ◽  
Vol 24 (5) ◽  
pp. 9-14
Author(s):  
R. Bayer ◽  
A. L. Fairchild ◽  
M. Zignol ◽  
K. G. Castro

In June 2017, the World Health Organization issued the Guidelines on Ethical Issues in Public Health Surveillance. Using the frame of public health ethics, the guidance declared that countries have an affirmative duty to undertake surveillance and that the global community had an obligation to support those countries whose resources limited their capacity. The centrality of TB surveillance has long been recognized as a matter of public health practice and ethics. Nevertheless, contemporary global realities make clear that TB surveillance falls far short of the goal of uniform notification. It is this reality that necessitated the paradoxical turn to research studies that require informed consent and human subjects' ethical review, the very burdens that mandated notification were designed to overcome.


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