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Studies and research at Handicap International : promoting ethical data management

BRUS, Aude
September 2015

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This guide explains the importance of ethical data collection and management. Using Handicap International’s decades experience implementing projects and programmes globally, the report highlights the impact of data collection and the importance of implementing ethical approaches in a variety of situations where data is being collected. It aims to raise the awareness of Handicap International’s operational and technical staff and their partners to the ethical questions to be considered when managing data (preparation, collection, processing, analysis and sharing of information). It reaffirms the ethical principles underpinning the organisation’s actions and concludes with eight ethical recommendations that are applicable to studies and/or research in our intervention settings

Moral wrongs, disadvantages, and disability : a critique of critical disability studies

VEHMAS, Simo
WATSON, Nick
November 2013

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This paper offers a review of Critical disability studies (CDS), an approach which challenges the predominantly materialist outlook of more conventional approaches to the study of disability. The paper “reviews the ideas behind the development of CDS and analyses and critiques some of its key ideas. Starting with a brief overview of the main theorists and approaches contained within CDS, the paper then moves on to normative issues; namely, to the ethical and political applicability of CDS”
Disability & Society, Volume 29, Issue 4

Paying stories of impairment - parasitic or ethical?|Reflections undertaking anthropological research in post-conflict Sierra Leone

BERGHS, Maria
December 2011

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This article presents ethnographic research in Sierra Leone with people with disabilities. The author explores challenges faced with the research and the importance of engaging in more reciprocal and collaborative communal research using a social model of disability framework to try and access discourses
Journal of Disability Research, Vol 3, No 4

International compilation of human research protections

OFFICE FOR HUMAN RESEARCH PROTECTIONS, US DEPARTMENT OF HEALTH AND HUMAN SERVICES
2009

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This compilation lists the approximately 1,100 laws, regulations, and guidelines that govern human subjects research in 92 countries, as well as standards from a number of international and regional organisations. Its purpose is to help these groups familiarise themselves with the laws, regulations and guidelines where the research will be conducted and to assure those standards are followed appropriately. This edition includes numerous additions and updates to the 2008 Edition, and features the laws, regulations and/or guidelines for seven new countries: Burma (also known as Myanmar), Egypt, the Gambia, San Marino, South Korea, the Sudan and Vietnam. This compilation was developed for institutional research bodies/ethics committees, researchers, sponsors, and others who are involved in international research

An ethical agenda in disability research : rhetoric or reality?

BARNES, Colin
2008

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This chapter reviews "key issues in the emergence of emancipatory disability research with particular reference to the British literature. It begins with a brief discussion of research ethics in relation to the emergent critique of traditional ways of researching disability, particularly its theoretical standpoint and the disempowering role of research experts. Second, attention centres on the key features of ethical or emancipatory disability research in line with a social model framework. This stresses an avowed commitment to the empowerment of disabled people through a process of political and social change while also informing the process of doing disability research. The third section addresses claims that the emphasis on political partiality deflects attention away from important debates about the choice of methodology and data collection strategies, and their implementation when undertaking disability research"
Note: This is the penultimate draft of an article that appears in: Mertens, D. M. and Ginsberg P. E.(eds.) 2008: The Handbook of Social Research Ethics, London: Sage, pp. 458-473

The medical peace work textbook

ROWSON, M
MELF, K
Eds
2008

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This textbook provides an introduction to medical peace work and includes chapters relating to human rights; the causes and health effects of war and violent conflict; how health workers can promote peace-building and reconstruction; and the health and well-being needs of refugees and immigrants. The book is aimed at doctors, nurses, public health workers and other health professionals, and students. This e-textbook is part of an online course on Medical Peace Work. The book can be consulted, downloaded, or printed for free without registering for the course

Disability and deafness, in the context of religion, spirituality, belief and morality, in Middle Eastern, south Asian and east Asian histories and cultures : annotated bibliography

MILES, M
July 2007

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This bibliography introduces and lists 450 resources, across the beliefs, religions and cultures of the Middle East and much of Asia, from antiquity to the present. More specifically, it annotates modern and historical materials in translation, that are relevant to disability, mental health issues and deafness.It would be useful for anyone interested in religion and culture as they relate to disability in society

Getting the message across : the mass media and the response to AIDS

JOINT UNITED NATIONS PROGRAMME ON HIV/AIDS (UNAIDS)
December 2005

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The mass media have the potential to provide a platform for discussion, communication and education on HIV and AIDS, giving a voice to people living with HIV and AIDS (PLWHA), challenging stigma and discrimination, lobbying policy makers and building partnerships and capacity through sharing and transferring skills and expertise. However, mass media can also disseminate misleading messages, while HIV/AIDS communication competes with other topics for broadcasting time and audiences. This report presents three case studies of effective and creative use of the media in South Africa: Soul City and Soul Buddyz adopt an 'edutainment' approach, aiming both to educate and entertain; the Community Health Media Trust produces a series of programmes addressing issues concerning people with HIV/AIDS; Takalani makes television and radio programmes, to encourage small children to develop self-esteem, offer positive models and destigmatise PLWHA. Detailing the lessons learned from these experiences, the report looks at how target audiences are chosen, how partnerships are formed, how topics and ideas are developed and what ethical issues arise

Part 46 : protection of human subjects

OFFICE FOR HUMAN RESEARCH PROTECTIONS (OHRP)
June 2005

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This policy regulations outline the basic US Health and Human Services Policy for Protection of Human Research Subjects. It also provides additional policy information about protection for pregnant women, human foetuses, neonates and children involved as subjects in research. This is an important document for anyone who is completing research with human research subjects in the United States

Researching across cultures : issues of ethics and power [whole issue]

MARSHALL, Anne
BATTEN, Suzanne
September 2004

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Cultural diversity manifests in all relationships, including research relationships. Academic investigators work across a broad range of cultures that goes beyond ethnicity. What implications are most important for academic researchers to consider when designing and implementing a project? A review of relevant literature suggests that ethical implications begin with the power aspects in the research relationship. Consent, research processes, research design, data ownership, and uses of data are also salient issues that arise. [Authors' abstract]

Human subject regulations decision charts

OFFICE FOR HUMAN RESEARCH PROTECTIONS (OHRP)
September 2004

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These graphic aids are a guide to help decide if a research activity involving human subjects needs to be reviewed by an institutional review board (IRB) under the requirements of the US Department of Health and Human Services. The charts specify the following: whether an activity is research that must be reviewed by an IRB, whether the review may be performed by expedited procedures, and whether informed consent or its documentation may be waived. This document is useful for institutional review boards (IRBs), investigators, and others who are conducting research with human subjects

Psicoterapia vía Internet, su práctica, regulación e investigación : el caso del tabaquismo|[Practice, research and regulatory issues of psychotherapy via the internet : the case for tobacco smoking]

PATONI Maldonado, Roberto Israel
May 2003

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Since tobacco smoking continues to represent a serious public health problem worldwide, and digital telecommunications have shown an explosive growth in the last two decades, the present study aimed to document and analyze both areas from the standpoint of human behaviour. The authors propose ways to design and implement cognitive-behavioural interventions via the internet for smokers. The proposal explores such aspects as materials, cost-benefit and basic infrastructure needed for the eventual implementation of the intervention

Health and human rights readers

SHUFTAN, Claudio
2003

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A compilation of a series of electronic bulletins on health and human rights issues. Calls for a politicised NGO sector and an empowered people's movement to redress the 'charity' model of development and move to an authentically rights-based approach

Ethics and the Internet in west Africa : toward an ethical model of integration|Les enjeux éthiques d’Internet en Afrique de l’Ouest : vers un modèle éthique d’intégration

BRUNET, Patrick
TIEMTORE, Oumarou
VETTRAINO-SOULARD, Marie-Claude
2002

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This book focuses on ethical questions related to the use of the Internet in west Africa. It examines the manner in which the spread of the Internet in Africa raises serious ethical issues; issues that should be identified to ensure that, in the future, the adaptation and integration of Internet technology will be compatible with the development of Africa's nations. The book is based on field suveys in five west African countries, two anglophone and three francophone. For each country, a portrait of Internet users' ethical behaviours was created. The book demonstrates how the Internet, by virtue of its content and how the technology is uses, is creating upheaval in the practices and modes of communication within African communities. The book culminates with a proposed ethical model for the assimilation of the Internet that could serve as a reference for development policies in each of the respective countries and, more broadly, throughout Africa

When staff is underpaid : dealing with the individual coping strategies of health personnel

LERBERGHE, Wim Van
et al
2002

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'Health sector workers respond to inadequate salaries and working conditions by developing various individual ‘‘coping strategies’’ - some, but not all, of which are of a predatory nature. The paper reviews what is known about these practices and their potential consequences (competition for time, brain drain and conflicts of interest)....[It] argues that...Governments will need to recognize the dimension of the phenomenon and systematically assess the consequences of policy initiatives on the situation and behaviour of the individuals that make up their workforce'

Into the new millennium : Inclusion International's millennium development goals

INCLUSION INTERNATIONAL
2001

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This paper provides an overview of Inclusion International’s priorities in the following areas: education, poverty reduction, children's rights, maternal and infant health care, ethical medical research and human rights. It provides a realistic snapshot of the current situation facing people with disabilities. Inclusion International’s millennium development goals (MDGs) mirror those of the UN to link efforts and achieve results for people with intellectual disabilities and their families. Inclusion International’s MDGs provide an agenda for inclusive policy and programming in education, maternal and child health, poverty reduction, human rights, gender equality, HIV/AIDS and global partnership which is substantiated by clear targets that they are committed to working towards by the year 2015

Towards ethical guidelines for dealing with unsolicited patient emails and giving teleadvice in the absence of a pre-existing patient-physician relationship : systematic review and expert survey

EYSENBACH, G
2000

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A systematic review looking at email communication, solicited and unsoliticed between patient and clinician, whether these constitute medical practice and clinicians are ethically obligated to respond. The review seeks to provide a set of guiding ethical principles applicable to this interaction

eHealth code of ethics

EHEALTH ETHICS INITIATIVE
2000

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The goal of the e-Health Code of Ethics is to make sure that people can confidently and with full understanding of known risks realise the potential of the Internet in managing their own health and the health of those in their care. It sets out eight principles which should guide the provision of health information on the Internet: candor, honesty, quality, privacy, informed consent, professionalism, responsible partnering and accountability

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