ACN - 101321555 Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)
Search
Generic filters
Exact text matches only
Search into
Filter by Categories
Research integrity
Filter by Categories
Human Research Ethics

Resource Library

Research Ethics MonthlyAbout Us

ResourcesVulnerability

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

‘It’s never okay to say no to teachers’: Children’s research consent and dissent in conforming schools contexts (Papers: Perpetua Kirby | May 2020)0

Posted by Admin in on June 11, 2020
 

Abstract

With thanks to Dr Jo-Anne Kelder, University of Tasmania for suggesting this great paper.  This is a recommended read for researchers and research ethics reviewers.

This article examines the limits to children giving research consent in everyday school contexts that emphasises their conformity to comply with adult expectations, and highlights children’s competence and agency in navigating this conformity through different practices of dissent. It draws on research into children’s agency, using a multimodal ethnography of Year 1 classrooms in two English primary schools. The article includes a reflexive methodological focus, exploring the extent to which I counter the schools’ emphasis on conformity. This includes creating visuals for children to practice consent; positioning myself as the researcher in a non‐teacher role, as ‘least adult’ and the one who ‘least knows’; and designing interview spaces markedly different from classrooms. The article examines how children navigate conforming discourses by finding different ways to dissent in the research. Firstly, children demonstrate a sophisticated awareness of the cultural norms of indicating refusals beyond saying the word ‘No’. Secondly, children achieve unnoticeablity, by which they absent themselves from the ‘on‐task’ classroom culture, and by extension the research process. Thirdly, they engage in playful dissent, demonstrating their political knowingness of the classroom social order. The article discusses the implications for educational research when the values of consent are in conflict with a schooling focused on conformity. This includes emphasising the limits of consent procedures, paying closer attention to how researchers recognise and respond ethically to children’s multiple practices of dissent, and using research to disrupt problematic power structures in education settings that limit possibilities for children’s consent.

Kirby, P. (2020), ‘It’s never okay to say no to teachers’: Children’s research consent and dissent in conforming schools contexts. British Educational Research Journal. doi:10.1002/berj.3638
Publisher (Open Access): https://onlinelibrary.wiley.com/doi/full/10.1002/berj.3638

‘Autistic voices should be heard.’ Autistic adults join research teams to shift focus of studies – Science (Emily Willingham | April 2020)0

Posted by Admin in on May 5, 2020
 

Professional burnout is all too familiar: Go at something too hard for too long, and the motivational tank empties. But burnout for an autistic person isn’t always about overwork, Dora Raymaker, an autistic systems scientist at Portland State University (PSU), found in a study of autistic workers. Instead, the need to mask autistic behaviors through a workday with nonautistic people can cause chronic exhaustion, reduced ability to tolerate stimuli like light or sound, and loss of skills, the study showed through interviews and a survey of social media comments.

The work, which Raymaker’s team published last month, highlights a new trend in autism research. Raymaker and colleagues are part of a small but growing number of research teams with autistic members. These groups are shifting the focus in autism research from cause and cure to practical steps, including ones that help autistic people in settings such as the workplace. And they’re publishing some of their findings in a new journal, Autism in Adulthood, which is dedicated to including the perspectives of autistic people in what it publishes.

Interest in those perspectives is “skyrocketing,” says Christina Nicolaidis, a co-author on the burnout study. Nicolaidis, a professor in the School of Social Work at PSU, has an adult son who is autistic. Although much research on autism has focused on children, autistic adults who came of age in the 1990s and early 2000s are joining the field and bringing a focus on their own experience. One member of that cohort is TC Waisman, a doctoral candidate at the University of Calgary studying how faculty and staff can improve autistic students’ college experiences. Waisman says she sees researchers increasingly “respecting us as our own self-determined culture and foregrounding our needs in studies.”

Read the rest of this discussion piece

Vulnerability in human research (Papers: Ian J. Pieper & Colin J. H. Thomson AM | April 2020)0

Posted by Admin in on April 29, 2020
 

Abstract
The conduct of prior ethics review of human research projects helps to protect vulnerable groups or populations from potential negative impacts of research. Contemporary considerations in human research considers the concept of vulnerability in terms of access to research opportunities, impacts on the consenting process, selection bias, and the generalisability of results. Recent work questions the validity of using enumerated lists as a check box approach to protect research participants from exploitation. Through the use of broad categories to treat cohorts of human research participants as homogenous classes and label some participants as vulnerable merely because they are members of a particular class, some ethics reviewers have used the National Statement on Ethical Conduct in Human Research to strip individuals of their “ethical equality”. Labelling people as vulnerable does not help researchers or human research ethics committee members develop an understanding of the complexities of applying the principles of respect and of justice in ethical decision-making. Conversely, defining specific cohorts of research participants as needing nuanced ethical consideration, due to their vulnerable nature, may imply that other population groups need not be considered vulnerable. We contend that this assumption is erroneous. This paper explores the way that human research ethics guidance documents treat vulnerability within the Australian context and draws on contemporary discussion to focus an alternative perspective based on the principles in the National Statement on Ethical Conduct in Human Research for researchers and human research ethics committee members to consider.

Keywords
Vulnerability, Human Research Ethics, Human Research Ethics Committee (HREC), IRB

Pieper, I.J., Thomson, C.J.H. (2020) Vulnerability in human research. Monash Bioethics Review. https://link.springer.com/article/10.1007/s40592-020-00110-4

Does Research Have Any Value in a Refugee Crisis? – Scholarly Kitchen (Haseeb Irfanullah | April 2020)0

Posted by Admin in on April 5, 2020
 

Bangladesh is now hosting more than 859,000 Rohingyas — the ethnic Muslim minority of Myanmar — at 34 refugee camps on its southeastern Cox’s Bazar-Teknaf peninsula. Between 25 August and 31 December 2017, over 723,000 Rohingyas entered Bangladesh to save themselves from genocide in Myanmar. These people are staying in camps created by clearing 2,500 hectares of forestland. The Government of Bangladesh, donors, UN agencies, and national and international NGOs are collectively managing this unmeasurable humanitarian crisis.

This Scholarly Kitchen piece makes a good point about worrying less about publishing in prestigious journals for academic sake and more about making sure the outcomes are given to people who can actually make use of the information.

The challenges around this crisis are multi-dimensional and complex — fulfilling refugees’ everyday basic needs, protecting them from illegal exploitation, ensuring the future of the 55% who are children, saving them from epidemics and pandemics, reducing potential tension between the Rohingya refugees and the Bangladeshi hosts, and tackling geopolitics around this crisis to name but a few. To researchers, this crisis gives a tremendous opportunity to explore the situations, explain the challenges, test ideas and innovations, recommend solutions, and evaluate actions.
.

But academic research takes time. Response to humanitarian emergencies like a refugee crisis, on the other hand, is all about urgent action. Here a delay can be a question of life or death. Refugee crises thus demand actions based upon past experiences — what worked and what could work given certain factors within a specific context and ground reality.
.

Read the rest of this discussion piece

0