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Animal Ethics Biosafety Human Research Ethics Research Integrity

(Australia) “Textbook case” of disability discrimination in grant applications – Nature (Jon Brock | January 2021)

Posted by Dr Gary Allen in Research Integrity on January 24, 2021
Keywords: Australia, Institutional responsibilities, Peer review, Research integrity, Respect for persons

The Linked Original Item was Posted On January 19, 2021

A brick wall with the word "RESPECT" attached to it in embossed letters

Justin Yerbury’s appeal prompts Australia’s NHMRC to revise its policy.

In May 2020, when Australia’s National Health and Medical Research Council (NHMRC) announced the results of its annual Investigator Grant funding round, Justin Yerbury was among the 87% of applicants who missed out.

Apart from its intrinsic interest, it is relevant to PPI initiatives that draw in people with disabilities as partners. If we can’t avoid discriminating against high achieving researchers with disabilities, how can we avoid either such discrimination or tokenism in PPI?

A professor in neurodegenerative disorders at the University of Wollongong in New South Wales, Australia, Yerbury has motor neurone disease (MND). The condition means he has lost voluntary control of his muscles. He requires daily support from a team of carers, and his breathing is assisted by a mechanical ventilator. Unable to speak or type, he communicates using a device that tracks his eye-movements, and uses an electric wheelchair.

The feedback on his grant application showed that he had narrowly missed the cut, primarily because assessors were underwhelmed by his record of publications. “The track record was promising”, one assessor wrote. “However, relative to opportunity, I was looking for more first- and last-author publications.”

Read the rest of this discussion piece

 

Related Reading

(UK) University College London apologises for role in promoting eugenics – The Guardian (Richard Adams | January 2021)

A poor call and two missed opportunities, but otherwise not a bad proposed revision to NS s5

Exploring Critical Issues in the Ethical Involvement of Children with Disabilities in Evidence Generation and Use – UNICEF Office of Research (Stephen Thompson, et al | July 2020)

(US) US biomedical agency has investigated hundreds claims of inappropriate conduct this year – Nature (Nidhi Subbaraman | December 2019)

Empowering and enabling participation in human research: Reflections from two Queenslanders living with Multiple Sclerosis

Expression of Interest: Consumer Inclusive Research – Consumer Reference Group

How to organize a conference that’s open to everyone – Nature (Nic Fleming | July 2019)

Conducting Accessible Research: Including People With Disabilities in Public Health, Epidemiological, and Outcomes Studies (Papers: Dianne Rios, et al | November 2016)

We respect you… we just don’t need to hear from you anymore: Should the consumer and their community participate in research as partners instead of just being subjects?

Research ethics: How to Treat People who Participate in Research – NIH (Ezekiel Emanuel, et al | nd)

Vulnerability in research subjects: a bioethical taxonomy (Kenneth Kipnis | 2001)

Vulnerability: new essays in ethics and feminist philosophy (Books: Catriona Mackenzie (Editor), et al | 2014)

Why bioethics needs a concept of vulnerability (Papers: Wendy Rogers, et al | 2012)

NDA (Ireland) Ethical Guidance for Research with People with Disabilities (Guidance | 2009)

Germany to probe Nazi-era medical science – Science (Megan Gannon | January 2017)

Doctor who blew whistle on defunded study speaks – Retraction Watch (Alison McCook July 2016)

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