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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

How to organize a conference that’s open to everyone – Nature (Nic Fleming | July 2019)0

Posted by Admin in on August 17, 2019
 

Thinking about the needs of all participants is key to a successful event.

Having enjoyed their meal in a neo-Gothic, wood-panelled grand hall, most delegates were on their way to the afternoon sessions. Meanwhile, Caroline Miles had just spent 20 minutes sitting in her wheelchair looking at the back of the delivery van blocking her path to both the talk and the lunch.

The simple strategies described in this piece speak not only to respect and justice in our endeavours, failing to be inclusive can significantly limit the relevance and impact of our work.  Gary has been compiling anecdotes from the field that would make you cry with laughter, or just cry.

Miles, a solicitor turned independent-researcher specializing in legal issues relating to social care, describes her attendance at the Socio-Legal Studies Association (SLSA) annual meeting at the University of Bristol, UK, last March as “demeaning and embarrassing and just horrible”. The talks took place across two buildings, and the lifts were frequently filled with participants who could have used nearby stairs. Her access was blocked by delivery vehicles on two occasions. When this made her late, sessions had to be interrupted as tables and chairs were rearranged to fit her in. Miles was provided with a dedicated support worker by the university, but says that networking took place in standing spaces that had no chairs at her level, and that access to disabled toilets was blocked by participants having refreshments.
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As Miles waited for someone to find the driver of the delivery vehicle blocking her way into the main meeting venue for the second time, she finally gave up. “I burst into tears and said, ‘That’s it, I’m going home’.”
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Conducting Accessible Research: Including People With Disabilities in Public Health, Epidemiological, and Outcomes Studies (Papers: Dianne Rios, et al | November 2016)0

Posted by Admin in on July 25, 2019
 

Abstract

People with disabilities are largely absent from mainstream health research. Exclusion of people with disabilities may be explicit, attributable to poorly justified exclusion criteria, or implicit, attributable to inaccessible study documents, interventions, or research measures. Meanwhile, people with disabilities experience poorer health, greater incidence of chronic conditions, and higher health care expenditure than people without disabilities. We outline our approach to “accessible research design”—research accessible to and inclusive of people with disabilities. We describe a model that includes 3 tiers: universal design, accommodations, and modifications. Through our work on several large-scale research studies, we provide pragmatic examples of accessible research design. Making efforts to include people with disabilities in public health, epidemiological, and outcomes studies will enhance the interpretability of findings for a significant patient population.

Rios, D., Magasi, S., Novak, C. & Harniss, M. Conducting Accessible Research: Including People With Disabilities in Public Health, Epidemiological, and Outcomes Studies, American Journal of Public Health 106, no. 12 (December 1, 2016): pp. 2137-2144.
https://doi.org/10.2105/AJPH.2016.303448
Publisher: https://ajph.aphapublications.org/doi/abs/10.2105/AJPH.2016.303448

Forced Migration Review – Issue 61 (Papers: Marion Couldrey and Jenny Peebles Editors | June 2019)0

Posted by Admin in on July 2, 2019
 

the ETHICS issue
exploring ethical questions that confront us in our work

We each live according to our own personal code of ethics but what moral principles guide our work? The 19 feature theme articles in this issue debate many of the ethical questions that confront us in programming, research, safeguarding and volunteering, and in our use of data, new technologies, messaging and images. Prepare to be enlightened, unsettled and challenged. This issue is being published in tribute to Barbara Harrell-Bond, founder of the Refugee Studies Centre and FMR, who died in July 2018.

Forced Migration Review issue 61 www.fmreview.org/ethics
PDF copy of this edition

Contents

  • 4 Big data, little ethics: confidentiality and consent Nicole Behnam and Kristy Crabtree
  • 7 New technologies in migration: human rights impacts Petra Molnar
  • 9 Social media screening: Norway’s asylum system Jan-Paul Brekke and Anne Balke Staver
  • 12 Developing ethical guidelines for research Christina Clark-Kazak
  • 15 ‘Over-researched’ and ‘under-researched’ refugees Naohiko Omata
  • 18 Research fatigue among Rwandan refugees in Uganda Cleophas Karooma
  • 20 Over-researching migration ‘hotspots’? Ethical issues from the Carteret Islands Johannes M Lutz
  • 23 Ethics and accountability in researching sexual violence against men and boys Sarah Chynoweth and Sarah Martin
  • 26 Ethics and consent in settlement service delivery Carla Nayton and Sally Baker
  • 28 Ethical primary research by humanitarian actors Prisca Benelli and Tamara Low
  • 30 EU migration strategy: compromising principled humanitarian action Anaïs Faure Atger
  • 33 A humanitarian approach to travel medicine? Marta Aleksandra Balinska
  • 36 Principled humanitarian assistance and non-State armed groups Ruta Nimkar, Viren Falcao, Matthew Tebbutt and Emily Savage
  • 39 Ethical dilemmas posed by unethical behaviour by persons of concern Anna Turus
  • 41 Ethical quandaries in volunteering Ashley Witcher
  • 44 The ethical use of images and messaging Dualta Roughneen
  • 47 Representing refugees in advocacy campaigns Natalie Slade
  • 49 Putting safeguarding commitments into practice Agnes Olusese and Catherine Hingley
  • 52 Safeguarding in conflict and crisis Sarah Blakemore and Rosa Freedman Tribute to Barbara Harrell-Bond
  • 55 A Life Not Ordinary: our colleague Barbara Harrell-Bond Matthew Gibney, Dawn Chatty and Roger Zetter
  • 56 A lifelong commitment to justice HRH Prince El Hassan bin Talal of Jordan
  • 58 A refugee-centred perspective Anita H Fábos
  • 60 Building expert witness reports: Barbara’s legacy Maja Grundler
  • 62 The helpfulness of Imposing Aid: a tribute from the Refugee Law Project Chris Dolan
  • 65 Barbara’s ethics of antagonism Joshua Craze
  • 67 AMERA: delivering a refugee-centred approach to protection Sarah Elliott and Megan Denise Smith
  • 69 From a critique of camps to better forms of aid Alyoscia D’Onofrio
  • 72 Resist injustice Olivier Rukundo

Infecting healthy people in vaccine research can be ethical and necessary – The Conversation (Michael Selgelid & Euzebiusz Jamrozik | June 2019)0

Posted by Admin in on July 1, 2019
 

Medical experiments involving intentionally infecting people with bacteria, viruses, and parasites are surprisingly common. And they are becoming more common worldwide, particularly in developing countries.

The ultimate aim of these “human challenge studies” is usually to test potential new vaccines.

However, because of the risks involved, this kind of research raises difficult ethical questions. For example, who should be infected? And which pathogens would be too dangerous to use?

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