残障研究方法与研究伦理National Disability Authority-Ethical guidlines for disability research.docxVIP

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残障研究方法与研究伦理National Disability Authority-Ethical guidlines for disability research.docx

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National Disability Authority Change style:National Disability Authority, 25 Clyde Road, Dublin 4 Tel: (01) 6080400 Fax:(01) 6609935 Email: nda@nda.ieEthical Guidance for Research with People with DisabilitiesOctober 2009Introduction to Disability Research and EthicsResearch is undertaken to expand knowledge, discover the truth and provide evidence for practitioners, policy-makers and legislators.[1] Research that involves people with disabilities is important in uncovering issues requiring attention; in informing policy; in evaluating programmes and services; and in tracking how social and economic change affects people with disabilities. The importance of research and data related to disability has been underscored in the Report of the Commission on the Status of People with Disabilities (1996), and in the United Nation’s Convention on the Rights of Persons with Disability (2006), adopted in December 2006.[2]Disability research ethics are located within the wider research ethics framework. Ethical principles require that any research involving human subjects is framed and conducted in a way that respects the human rights of the individuals concerned. The UN Convention sets out what recognised human rights principles mean in respect of people with disabilities. Central to the UN Convention’s understanding of human rights are respect for the inherent dignity, individual autonomy — including the freedom to make one’s own choices — and independence of persons. Other core principles spelled out in Article 3 of the UN Convention and central to the ethical evaluation of research include:EqualityFull and effective participation and inclusion in societyRespect for differenceAccessibility.Examples of applying these principles in a research context include the following:Involving people with disabilities in an appropriate way in informing or shaping the research process respects them as active participants in the research and not as passive objects of research.Ensuring that