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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

NDA (Ireland) Ethical Guidance for Research with People with Disabilities (Guidance | 2009)0

Posted by Admin in on June 20, 2018
 

“As the field of disability research in Ireland expands, it is vital that quality in such research be ensured.

In accordance with its statutory role in relation to disability research, the National Disability Authority offers new ethical guidelines for disability research as a resource to assist the expansion of quality disability research in Ireland. The guidelines have been drawn up through consideration of best practice internationally alongside a wide process of consultation, in particular consultation with people with disabilities.

These guidelines are designed to be used by those involved in funding, conducting, or managing disability research, most especially that which involves people with disabilities as participants. They do not replace existing general ethical guidelines in social and policy research but supplement them by providing an outline of key issues from a disability perspective.”

Access the guidance

TABLE OF CONTENTS
1. INTRODUCTION TO DISABILITY RESEARCH AND ETHICS 5
2. ETHICAL GUIDANCE ON RESEARCH WITH PEOPLE WITH DISABILITIES 11
3. CORE VALUES FOR RESEARCH WITH PEOPLE WITH DISABILITIES 17
4. GUIDANCE FOR GOOD PRACTICE IN RESEARCH WITH PEOPLE WITH DISABILITIES 23
5. CASE STUDIES 45
6 REFERENCES 55
APPENDIX 1 69
ENDNOTES 75

 

The Dying Scientist and his Rogue Vaccine Trial – Wired (Amanda Schaffer | May 2018)0

Posted by Admin in on June 18, 2018
 

Bill Halford was convinced he’d found a miracle cure, but he was running out of time to prove it. So he teamed up with a Hollywood executive and recruited a band of desperate patients.

IN A PHOTO from 2009, Bill Halford, who was then 40 years old, looks like a schoolboy who hasn’t quite grown into his big ears. He wears an ill-fitting red shirt tucked into belted khakis; his jawline is square and his eyes are full of wonder. The picture was taken at Southern Illinois University, where he was a respected professor. A few years before, he had made a significant discovery—one that would determine the course of his life.

Halford, a microbiologist, had taken an interest in the peculiar nature of herpes—how it lies dormant in the nervous system and reactivates to cause disease. Herpes is one of the most pervasive viral infections in the world, sometimes causing painful genital blisters, and it has frustrated scientists attempting to find a cure. But in 2007, Halford realized that a weakened form of the virus he’d been studying might serve as a vaccine. He designed an experiment in which he inoculated mice with this variant, then exposed them to the wild-type form of the virus. In 2011 he published the results: Virtually all the mice survived. By contrast, animals that were not injected with his vaccine died in large numbers. It was promising science.

That same year, however, Halford became seriously ill. At first he thought he had a sinus infection, but it turned out to be a rare and aggressive form of cancer, sinonasal undifferentiated carcinoma. Halford was 42 years old at the time, with two teenage children. He underwent chemotherapy and radiation followed by surgery, but he was told that the form of cancer he had did not usually stay at bay for long. Halford had always been determined—“a 90-hours-a-week sort of researcher,” as his wife, Melanie Halford, puts it. The cancer diagnosis only seemed to harden his focus. Others had tried, and failed, to develop a herpes vaccine, but Halford was convinced that his method—using a live, attenuated form of the virus—would succeed. He would use whatever time he had left to show he was right.

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Building an Effective Research Safety Protocol and Emergency Exit Strategies – SSRC (Angelica Duran-Martinez | June 2014)0

Posted by Admin in on June 17, 2018
 

Social Science Research Council Papers
DRUGS SECURITY AND DEMOCRACY PROGRAM
DSD WORKING PAPERS ON RESEARCH SECURITY NO.4

This examination of strategies to minimize risks and identify dangerous situations for researchers in conflict and crime-ridden areas focuses on the design of a flexible safety and exit protocol that can help researchers return home safely. Safety depends on how scholars gain access to research locations, introduce their work to potential subjects, and pose questions to them. Naturally, defining what security is and determining levels of danger is a subjective and fluid process contingent on factors intrinsic to the project. The aim here is to help researchers think through security issues systematically and build a working written protocol to deal with emergency situations they may encounter.

The discussion first addresses risk assessment and its role in building effective safety protocols. Risk assessment depends on variables such as research location, type and duration of research, and personal characteristics of the researcher. The second section examines the role of pre-fieldwork preparation in researcher safety, and the third analyzes the role of routine field safety procedures in maintaining awareness of evolving security threats and exit strategies. Ultimately, this examination seeks to go beyond how to conduct research safely, emphasizing instead how to increase the chances of the researcher’s safe return home. Thus, the fourth section builds on sound safety procedures to outline the basic elements of exit protocols that can help researchers and their supporters obtain or render aid under emergency circumstances. The conclusion presents a rubric for creating and thinking through safety before, during, and after field research.

This guide is intended to help researchers think through crucial questions regarding risks and safety. They do not need to consider every issue mentioned here but should focus on those that appear more relevant to their projects. Scholars can define safety according to their own professional needs and develop exit protocols that can assist them in navigating both the ordinary fear and danger and the more extreme threats that affect their research locations

Duran-Martinez, Angelica (2014) Building an Effective Research Safety Protocol and Emergency Exit Strategies. SSRC Paper.
Publishers (Creative Commons): http://webarchive.ssrc.org/working-papers/DSD_ResearchSecurity_04_Duran-Martinez.pdf

 

Paper Accepted…Unless the Letter Was Forged – Scholarly Kitchen (Angela Cochran | April 2018)0

Posted by Admin in on June 15, 2018
 

Predation. It’s discussed all the time. Predatory journals are scamming unsuspecting authors by promising quick publication, and low, low fees to a never-heard-of-before open access journal. Alternatively, it may be true that some authors are the ones taking advantage of low cost OA in order to push through shoddy work and get credit for it. Conferences are another headache. Researchers attend conferences to get their work published and to network. There is no shortage of conferences promising to do just that only for attendees to realize when they get there that all is not what was advertised. In fact, a new website with a familiar name is offering attendees help in identifying these conferences.

Another scam seems to be taking hold in certain parts of the world. Over the last 5 years, the American Society of Civil Engineers (ASCE) has become aware of seven fake acceptance letters for our journals. Here’s how this goes:

An author contacts us and says, “Thank you for accepting my paper. Your letter said that the paper would be in the December issue but I looked and it’s not there. Please inform me of the new publication date.”

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