On the Track of C/overt Research: Lessons From Taking Ethnographic Ethics to the Extreme

2017 ◽  
Vol 24 (7) ◽  
pp. 453-463 ◽  
Author(s):  
Tereza Virtová ◽  
Tereza Stöckelová ◽  
Helena Krásná
Keyword(s):  
Informed Consent ◽  
Research Ethics ◽  
Ethical Dilemmas ◽  
Research Participant ◽  
Research Process ◽  
Institutional Review Boards ◽  
Power Dynamics ◽  
Institutional Review ◽  
Growing Body ◽  
Anthropological Research

Despite the growing body of literature that critically assesses the ambiguous impacts of institutional review boards (IRBs) on anthropological research, the key standards on which the IRB evaluations are based often remain unquestioned. By exposing the genealogy of an undercover research in which the authors participated as ethnographer, supervisor, and research participant, this article problematizes some of these standards and addresses the issues of power dynamics in research, informed consent, and anonymization in published work. It argues that rather than addressing genuine ethical dilemmas, IRB standards and the ethical fiction of informed consent mainly protect researchers from having to openly face the uncertainties of fieldwork. As an alternative, the authors put forth the notion of c/overt research, which perceives any research as processual and, in effect, becoming overt only during the research process itself. As such, it forces researchers to cultivate sensitivity to research ethics.

Qualitative research ethics on the spot

2015 ◽  
Vol 23 (4) ◽  
pp. 455-464 ◽  
Author(s):  
Christine Øye ◽  
Nelli Øvre Sørensen ◽  
Stinne Glasdam
Keyword(s):  
Qualitative Research ◽  
Informed Consent ◽  
Research Ethics ◽  
Ethical Issues ◽  
Ethical Dilemmas ◽  
Institutional Review Boards ◽  
Ethical Guidelines ◽  
Ethical Considerations ◽  
Institutional Review ◽  
Review Boards

Background: The increase in medical ethical regulations and bureaucracy handled by institutional review boards and healthcare institutions puts the researchers using qualitative methods in a challenging position. Method: Based on three different cases from three different research studies, the article explores and discusses research ethical dilemmas. Objectives and ethical considerations: First, and especially, the article addresses the challenges for gatekeepers who influence the informant’s decisions to participate in research. Second, the article addresses the challenges in following research ethical guidelines related to informed consent and doing no harm. Third, the article argues for the importance of having research ethical guidelines and review boards to question and discuss the possible ethical dilemmas that occur in qualitative research. Discussion and conclusion: Research ethics must be understood in qualitative research as relational, situational, and emerging. That is, that focus on ethical issues and dilemmas has to be paid attention on the spot and not only at the desktop.

MRI Research Proposals Involving Child Subjects: Concerns Hindering Research Ethics Boards from Approving Them and a Checklist to Help Evaluate Them

2011 ◽  
Vol 20 (1) ◽  
pp. 115-129 ◽  
Author(s):  
J. DEBORAH SHILOFF ◽  
BRYAN MAGWOOD ◽  
KRISZTINA L. MALISZA
Keyword(s):  
United States ◽  
Research Ethics ◽  
Gold Standard ◽  
The United States ◽  
Institutional Review Boards ◽  
Scientific Review ◽  
Initial Development ◽  
Institutional Review ◽  
Research Ethics Boards ◽  
A Current

The process of research is often lengthy and can be extremely arduous. It may take many years to proceed from the initial development of an idea through to the comparison of the new modalities against a current gold-standard practice. Each step along the way involves rigorous scientific review, where protocols are scrutinized by multiple scientists not only in the specific field at hand but related fields as well. In addition to scientific review, most countries require a further review by a panel that will specifically address the ethics of the proposed research. In Canada, those panels are referred to as Research Ethics Boards (REB), with the United States counterparts known as Institutional Review Boards (IRB).

Differences between research ethics committees

2007 ◽  
Vol 23 (1) ◽  
pp. 17-23 ◽  
Author(s):  
Sarah J. L. Edwards ◽  
Tracey Stone ◽  
Teresa Swift
Keyword(s):  
Research Ethics ◽  
Ethics Committees ◽  
Institutional Review Boards ◽  
Research Ethics Committees ◽  
Ethical Considerations ◽  
Local Conditions ◽  
Ethical Judgments ◽  
Risks And Benefits ◽  
The United Kingdom ◽  
Institutional Review

Objectives:To examine differences in the ethical judgments made by Research Ethics Committees (RECs) or Institutional Review Boards (IRBs).Methods:We did a review of the literature and included any study that attempted to compare the ethical judgments made by different RECs or IRBs when reviewing one or more protocol.Results:There were twenty-six articles reporting such discrepancies across Europe, within the United Kingdom, Spain, and United States. Of these studies, there were only five reports of some RECs approving while others rejecting the same protocol. All studies, however, reported differences in the clarifications and revisions asked of researchers regarding consent, recruitment, risks and benefits, compensation arrangements, and scientific issues.Conclusions:The studies were generally anecdotal reports of researchers trying to do research. New rules requiring a single ethical opinion for multi-site research at least in European Member States may simply conceal problematic issues in REC decision making. In the last analysis, we should expect a certain degree of variation and differences if we are to keep a committee system of review, although there is a pressing need to investigate the way in which RECs make these judgments. In particular, we need to identify the source of any aberrations, distortions, or confusions that could arbitrarily affect these judgments. Furthermore, local conditions remain important ethical considerations and should not be sidelined in pursuit of greater “consistency.”

scholarly journals Rapid Ethical Appraisal: A tool to design a contextualized consent process for a genetic study of podoconiosis in Ethiopia

2017 ◽  
Vol 2 ◽  
pp. 99 ◽  
Author(s):  
Tewodros Tariku Gebresilase ◽  
Zebene Deresse ◽  
Girmay Tsegay ◽  
Tesfaye Sisay Tessema ◽  
Abraham Aseffa ◽  
...  
Keyword(s):  
Informed Consent ◽  
Genetic Study ◽  
Research Process ◽  
Genomic Research ◽  
Community Members ◽  
Factors Affecting ◽  
Institutional Review ◽  
Field Workers ◽  
And Gender ◽  
Healthy Community

Background: Obtaining genuine informed consent from research participants in developing countries can be difficult, partly due to poor knowledge about research process and research ethics. The situation is complicated when conducting genomic research on a disease considered familial and a reason for stigmatisation. Methods: We used a Rapid Ethical Appraisal tool to assess local factors that were barriers to getting genuine informed consent prior to conducting a genetic study of podoconiosis (non-filarial elephantiasis) in two Zones of Ethiopia. The tool included in-depth interviews and focus group discussions with patients, healthy community members, field workers, researchers/Institutional Review Board (IRB) members, elders, religious leaders, and podoconiosis administrators who work closely with patients. Results: Most patients and healthy community members did not differentiate research from routine clinical diagnosis. Participants felt comfortable when approached in the presence of trusted community members. Field workers and podoconiosis administrators preferred verbal consent, whereas the majority of patients and healthy community members prefer both verbal and written consent. Participants better understood genetic susceptibility concepts when analogies drawn from their day-to-day experience were used. The type of biological sample sought and gender were the two most important factors affecting the recruitment process. Most researchers and IRB members indicated that reporting incidental findings to participants is not a priority in an Ethiopian context. Conclusions: Understanding the concerns of local people in areas where research is to be conducted facilitates the design of contextualized consent processes appropriate for all parties and will ultimately result in getting genuine consent.

scholarly journals Researchers’ perspectives on the role of study partners in dementia research

2014 ◽  
Vol 26 (10) ◽  
pp. 1649-1657 ◽  
Author(s):  
Betty S. Black ◽  
Holly Taylor ◽  
Peter V. Rabins ◽  
Jason Karlawish
Keyword(s):  
Academic Research ◽  
Research Participation ◽  
Research Process ◽  
Institutional Review Boards ◽  
Enrollment Decisions ◽  
Caregiver Support ◽  
Institutional Review ◽  
Dementia Research ◽  
Role Responsibilities

ABSTRACTBackground:Study partners for dementia research participants are vital to the research process, but little is known about their role, responsibilities, and experiences. Study partners are usually family members or friends – often the patient's informal caregiver – who are knowledgeable about and usually accompany the participant to study visits. This study examines researchers’ perspectives on the role of study partners in dementia research.Methods:Qualitative data collection and analytic methods were used. Semi-structured individual interviews with principal investigators, study coordinators, and research nurses (i.e. researchers; n = 17) at two academic research sites were recorded, transcribed, and content analyzed to identify themes in the data.Results:According to researchers, study partners either make or help make research enrollment and post-enrollment decisions, serve as knowledgeable informants for the participants, manage the logistics that enable participants to comply with a study's protocol, and provide comfort and encouragement for the patient to engage in and complete a study. Researchers describe ideal qualities of study partners as being able to provide reliable information, being dependable and adherent to the protocol, and not expecting a benefit. They also report that study partners may face both practical and emotional challenges during research participation. However, researchers believe that study partners derive dementia-related education, caregiver support, and satisfaction from their involvement in research.Conclusions:Investigators, potential study partners, and institutional review boards should be aware of study partners’ research responsibilities, challenges, and their interests as caregivers.

Upholding “Colonial Unknowing” Through the IRB: Reframing Institutional Research Ethics

2018 ◽  
Vol 25 (9-10) ◽  
pp. 1056-1064 ◽  
Author(s):  
Sheeva Sabati
Keyword(s):  
Research Ethics ◽  
Academic Research ◽  
Institutional Review Boards ◽  
Institutional Research ◽  
Origin Stories ◽  
History Of Research ◽  
Institutional Review ◽  
History Of ◽  
The Common ◽  
A Site

This article considers the institutionalization of research ethics as a site of “colonial unknowing” in which the racial colonial entanglements of academic research and institutions are obscured. I examine the origin stories situating Institutional Review Boards (IRBs) as a response to cases of exceptional violence, most notably the Tuskegee syphilis experiment, within an otherwise neutral history of research. I then consider how the 2018 revisions to the Common Rule extend “colonial unknowing” by decontextualizing the forms of risk involved in social and behavioral research. I situate these complicities as necessary starting points toward anticolonial research ethics of “answerability.”

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