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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.”

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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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‘How was Your Trip?’ Self-care for Researchers Working and Writing on Violence (Kimberly Theidon | 2014)0

Posted by Admin in on June 12, 2018
 

Social Science Research Council
DRUGS, SECURITY AND DEMOCRACY PROGRAM | DSD WORKING PAPERS ON RESEARCH SECURITY: NO. 2

ABOUT THE PROGRAM
The Drugs, Security and Democracy (DSD) Program strives to create a stronger, more systematized knowledge base on drugs, security, and democracy in Latin America and the Caribbean; to build capacity—both institutional and individual—by supporting relevant research; and to encourage policy-relevant, evidence-based research that could lead to the development of alternatives to present-day drug policies. Support is provided for research across a variety of disciplines—anthropology, criminology, economics, history, international relations, journalism, legal studies, political science, public health, public policy, sociology, and other related fields—to create a network of scholars interested in developing alternative approaches to drug policy.

ABOUT THE SERIES
Over the last generation, activists, journalists, and researchers working in Latin America have increasingly faced the challenge of operating in areas affected by chronic police and non-state violence. Further, rising crime rates are leading a growing number of scholars to conduct research on high-risk topics, which involves gathering data on communities that experience conflict, writing and publishing on these difficult and sensitive issues, and developing and implementing programs to deal with the needs of communities affected by violence as well as the wider conflicts in which those communities are embedded. Despite these trends, the literature on safe practices for those working in high-risk environments remains thin. The DSD Working Papers on Research Security series seeks to address this deficit by examining a range of research security concerns, providing a framework to help those working in the region consider how they can enhance their own safety as well

Theidon, K. (2014) ‘How was Your Trip?’ Self-care for Researchers Working and Writing on Violence. Drugs Security and Democracy Program DSD Working Papers in Research Security. New York: Social Science Research Council

Qualitative Research in Dangerous Places: Becoming an ”Ethnographer” of Violence and Personal Safety (Guidance: Social Science Research Council | 2016)0

Posted by Admin in on June 10, 2018
 

Social Science Research Council | Working Papers

“Over the last generation, activists, journalists, and researchers working in Latin America have increasingly faced the challenge of operating in areas affected by chronic police and non-state violence. Further, rising crime rates are leading a growing number of scholars to conduct research on high-risk topics, which involves gathering data on communities that experience conflict, writing and publishing on these difficult and sensitive issues, and developing and implementing programs to deal with the needs of communities affected by violence as well as the wider conflicts in which those communities are embedded. Despite these trends, the literature on safe practices for those working in high-risk environments remains thin. The DSD Working Papers on Research Security series seeks to address this deficit by examining a range of research security concerns, providing a framework to help those working in the region consider how they can enhance their own safety as well as the safety of their associates and research participants.”

Goldstein, D. (2016) Qualitative Research in Dangerous Places: Becoming an ‘Ethnographer’ of Violence and Personal Safety. Brooklyn, NY: Social Science Research Council.
Publisher (Open Access): http://webarchive.ssrc.org/working-papers/DSD_ResearchSecurity_01_Goldstein.pdf

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