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The ‘problem’ of undesigned relationality: Ethnographic fieldwork, dual roles and research ethics (Papers: Kirsten Bell | 2018)0

Posted by Admin in on October 28, 2018
 

Abstract

This October 2018 paper reflects on an area of research which continues to be a source of tension between at least some researchers* and research ethics reviewers: Is it a problem, or an advantage or in fact sometimes a necessity that there be an existing connection between participant and researcher. *Especially for ethnographers and anthropologists who might feel they are being held to a biomedical standard that is irrelevant and useless for their work. We have included links to a trove of related items in the Resource Library.

Perhaps the most unique feature of ethnographic fieldwork is the distinctive form of relationality it entails, where the ethnographer’s identity as a researcher is not fixed in the way typical of most other forms of research. In this paper, I explore how this ‘undesigned relationality’ is understood, both in procedural ethics frameworks and by the different disciplines that have come to claim a stake in the ‘method’ itself. Demonstrating that the ethical issues it entails are primarily conceptualized via the lens of the ‘dual role’, I use this as a means of exploring the ideal relationship between researcher and subject that procedural ethics frameworks are premised upon. I go on to explore the epistemological differences in ways that ethnographers themselves understand and respond to the multiple forms of relationality that characterize fieldwork and the challenge this poses to the possibility of a pan-disciplinary consensus on ethnographic research ethics.
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Keywords
ethnography, research ethics, dual roles, disciplinarity, relationality
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Bell, K. (2018). The ‘problem’ of undesigned relationality: Ethnographic fieldwork, dual roles and research ethics. Ethnography. https://doi.org/10.1177/1466138118807236

The Next Phase of Human Gene-Therapy Oversight – The New England Journal of Medicine (Francis S. Collins and Scott Gottlieb | August 2018)0

Posted by Admin in on October 18, 2018
 

The National Institutes of Health (NIH) and the Food and Drug Administration (FDA) have played key roles in the emergence of safe and effective human gene therapies. Now, we are proposing new efforts to encourage further advances in this rapidly evolving field.

The potential to alter human genes directly was first recognized nearly 50 years ago, around the same time as initial groundbreaking advances were being made in recombinant DNA technology. After intense discussions regarding the ethical, legal, and social implications of this technology, conversations were initiated at the NIH that led to the establishment of the Recombinant DNA Advisory Committee (RAC) in 1974. The RAC’s mission was to advise the NIH director on research that used emerging technologies involving manipulation of nucleic acids — a mission that was eventually expanded to encompass the review and discussion of protocols for gene therapy in humans. In 1990, the FDA oversaw the first U.S. human gene-therapy trial, which involved pediatric patients with adenosine deaminase deficiency and was conducted at the NIH Clinical Center in Bethesda, Maryland.

Although no major safety concerns were initially reported, over the course of the 1990s it became evident that many questions regarding the safety and efficacy of gene therapy remained unanswered. These unknowns were brought into sharp focus in 1999 when Jesse Gelsinger died of a massive immune response during a safety trial of gene therapy for ornithine transcarbamylase deficiency.1 This tragic death led to closer scrutiny of the field, including a greater focus on open dialogue and increased regulatory oversight.

Read the rest of this discussion piece

Research with former refugees: Moving towards an ethics in practice (Nisha Thapliyal and Sally Baker | September 2018)0

Posted by Admin in on October 14, 2018
 

Abstract:
Research into issues relating to people from refugee backgrounds has proliferated in line with the explosion in the numbers of people seeking refuge globally. In this think piece, we reflect on what it means to research with former refugees in contexts of resettlement in an academic and social climate dominated by audit culture and austerity politics. Drawing on an interdisciplinary literature and existing institutional ethics standards, we discuss key, often unaddressed, ethical issues which manifest throughout research processes of recruitment, data collection and dissemination. Specifically, we problematise static and decontextualised approaches to engaging with issues of vulnerability, fair selection, informed consent and the burdens and benefits of participation, and point towards the benefits of taking an ethics in practice approach. In doing so, we hope to make a useful contribution to our collective strategic repertoires to carry out ethical research in practice with former refugees.

Thapliyal, Nisha and Baker, Sally. (2018) Research with former refugees: Moving towards an ethics in practice [online]. The Australian Universities’ Review, Vol. 60, No. 2, Sep 2018: 49-56. ISSN: 0818-8068
https://search.informit.com.au/documentSummary;dn=818725514655109;res=IELHSS 

Practical, Epistemological, and Ethical Challenges of Participatory Action Research: A Cross-Disciplinary Review of the Literature (Papers: Danielle Lake and Joel Wendland | 2018)0

Posted by Admin in on October 9, 2018
 

Abstract
This article extends recent discussions on the practical, epistemological, and ethical challenges of participatory action research (PAR) for community-engaged scholars through a cross-disciplinary literature review. It focuses on how practitioners across fields define power, engage with conventional research approval processes, and manage risk. The review demonstrates that PAR can be a valuable research approach for community-engaged scholars, but problematic practices and disparities must be addressed. For instance, although PAR practitioners consistently articulate a commitment to empowering the community and shifting structures of oppression, contradictions around how to define and respond to power, engage with standard IRB practices, and cope with high levels of risk are prevalent. We conclude by offering a set of recommendations, highlighting the need for more transparent and self-reflexive methods; transdisciplinary practices; metrics designed to assess risk, inclusion, and power-sharing; ongoing dialogues across disciplinary and institutional divides; and inclusive authorship and open-access publishing practices.

Keywords: participatory action research, ethical challenges, interdisciplinarity, institutional

LAKE, Danielle; WENDLAND, Joel. Practical, Epistemological, and Ethical Challenges of Participatory Action Research: A Cross-Disciplinary Review of the Literature. Journal of Higher Education Outreach and Engagement, [S.l.], v. 22, n. 3, p. 11-42, sep. 2018. ISSN 2164-8212. Available at: http://openjournals.libs.uga.edu/index.php/jheoe/article/view/2093>.

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