ACN - 101321555 Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)
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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

(Canada) Learning to be refused: exploring refusal, consent and care in storytelling research (Papers: May Chazan & Melissa Baldwin | July 2020)0

Posted by Admin in on July 14, 2020

In 2018 in Nogojiwanong (Peterborough, Canada), we invited 17 activists, artists, and academics to share stories of intergenerational memory work – including land-based practices, ceremony, arts, and archiving – as ways of resisting erasure and making change. We grounded this research-generation workshop, Manifesting Resistance: Intergenerational Memory Work across ‘the Americas’, in storytelling from our gathering place, on Michi Saagiig territory; our methods included guided conversations, small group interviews, collaborative media making, and embodied workshops. As two settler researchers on a research team of eight (of different backgrounds, career stages, ancestries, and connections to Turtle Island (North America)), we centred a relational research ethics, drawing from feminist and postcolonial writings on anti-oppressive research and decolonial writings on refusal, relationality, and care. Despite our critical intentions, this research process was ethially complex. Drawing on fieldnotes and recordings, and inspired by scholars like Audra Simpson, we explore two key expressions of research refusal, how and why participants refused this research, and the connections between being refused and gaining consent. We illustrate how these research refusals generated critical knowledges, communities, processes, and spaces, and how negotiating consent in the context of these refusals (by slowing down, listening, and shifting our process) offered important challenges to institutional ethics.

Consent, research refusal, decolonial methodologies, relational ethics, indigenous-settler relations

Chazan, M. & Baldwin, M. (2020) Learning to be refused: exploring refusal, consent and care in storytelling research. Postcolonial Studies.  DOI 10.1080/13688790.2020.1781324

Fake Science: XMRV, COVID-19, and the Toxic Legacy of Dr. Judy Mikovits (Papers: Stuart J.D. Neil & Edward M. Campbell)0

Posted by Admin in on July 3, 2020

One cannot spend >5 min on social media at the moment without finding a link to some conspiracy theory or other regarding the origin of SARS-CoV2, the coronavirus responsible for the COVID-19 pandemic. From the virus being deliberately released as a bioweapon to pharmaceutical companies blocking the trials of natural remedies to boost their dangerous drugs and vaccines, the Internet is rife with far-fetched rumors. And predictably, now that the first immunization trials have started, the antivaccine lobby has latched on to most of them. In the last week, the trailer for a new “bombshell documentary” Plandemic has been doing the rounds, gaining notoriety for being repeatedly removed from YouTube and Facebook. We usually would not pay much heed to such things, but for retrovirologists like us, the name associated with these claims is unfortunately too familiar: Dr. Judy Mikovits.

Neil, S. J. D. & Campbell, E. M. (2020) Fake Science: XMRV, COVID-19, and the Toxic Legacy of Dr. Judy Mikovits. AIDS Research and Human Retroviruses. 545-549.
Publisher (Open Access):

COPE Forum 2 June 2020: What does peer review mean in the arts, humanities and social sciences? – COPE (June 2020)0

Posted by Admin in on June 30, 2020

The topic for discussion at our June 2020 COPE Forum asked the question: are there differences in gender and diversity issues in arts, humanities, and social sciences in peer review from other disciplines?

In the recent study by COPE in collaboration with Taylor & Francis on the arts, humanities and social science (AHSS) disciplines, respondents focused on a number of language, quality, diversity and inclusivity issues. In terms of the most frequently identified issues, these were:

1. Addressing language and writing quality barriers while remaining inclusive
2. Issues around the way in which authors receive and respond to criticism
3. Detecting plagiarism and poor attribution standards
4. Issues handling responses from reviewers to authors
5. Issues of self-plagiarism
6. Difficulties in upholding anonymity to authors and/or reviewers during peer review
7. Recognising and dealing with bias in reviewer comments
8. Assuring fair representation of new voices and diverse perspectives
9. Potential conflict of interest between authors and reviewers
10. Managing complaints and appeals

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‘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.”

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