The Convention on the Rights of Persons With Disabilities: A Foundation for Ethical Disability and Health Research in Developing Countries

摘要

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) has foregrounded disability as a human rights and equity issue, elevating it to a priority global research area. Academics from Western universities are likely to play an increasing role in disability health research in developing countries. In such contexts, there is a need to bridge the gap between procedural ethics and the realities of disability research in cross-cultural contexts. We provide guidance on engaging in ethical disability health research that intersects with and upholds the CRPD. We highlight challenges and tensions in doing so, underscoring the need to be sensitive to the sociocultural and political context of disability that determines how ethical research should proceed. We conclude with 5 recommendations. Since entering into force in May 2008, the United Nations Convention on the Rights of Persons with Disabilities (CRPD) has been the first human rights Convention to expressly protect persons with disabilities. 1 The Convention identifies persons with disabilities as people who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others, 2 (p4) and is the definition we use in this article. The CRPD not only secures the right to health for persons with disabilities (Article 25), but also secures rights related to the underlying determinants of health, defined as, “the circumstances in which people are born, grow up, live, work and age” and the systems put in place to deal with those circumstances. 3 (p26) This includes the social gradient of disability or recognition that people with disabilities in lower socioeconomic quintiles are likely to experience higher levels of functional impairment than those with disabilities in the quintiles above them. The CRPD affirms the large body of empirical evidence that shows that people with disabilities experience comparatively lower educational attainment, lower employment, worse standards of living, higher poverty, and poorer health outcomes than their nondisabled counterparts. 4–8 Although limited, the available evidence on people with disabilities in low and middle income countries (LMICs) suggests that they experience similar or even greater socioeconomic challenges and worse health outcomes than their counterparts in more affluent nations. 4,5 The lack of evidence makes redressing this situation with sustainable and equitable interventions problematic. 1,4,5,9–12 Article 31 of the CRPD, however, insists that States Parties have a legal obligation to undertake research to implement appropriate policies. 2 Article 31 implicitly extends data collection processes to include persons with disabilities in all stages of the research process. 10 The CRPD has foregrounded disability as a human rights and equity issue, and consistent with Article 32 (international cooperation), elevated it to a priority area of international research by increasing funding commitments. 1,10,13–15 It is expected that, in light of the unique opportunity offered by the CRPD, more researchers from Western universities, including researchers with disabilities, will undertake disability research in different cultural settings. Undertaking research in different cultural contexts, however, can present particular challenges because researchers are often required to make ethical decisions in complex situations and in settings where they may have limited familiarity. 16–18 These challenges relate to a range of factors, including different traditions of knowledge and ethical framings, sociocultural norms, and power hierarchies. 16–20 Furthermore, people with disabilities are not a homogeneous group, and economic, cultural, political, and social factors influence factors such as stigma and discrimination. If not acknowledged, these different dynamics can lead to researchers inadvertently perpetuating existing power differentials, working against the inclusive principles contained in the CRPD. 21–24 Although there has been research on the ethical challenges of research with people with disabilities and research ethics committees, 25–28 this has been primarily related to research in advanced economies. 26,27,29 Similarly, there is an emerging body of literature on the tensions between procedural ethics in Western-based universities and research in different contexts, 16,17,30–34 but this literature rarely includes research with persons with disabilities. Thus, there is limited guidance on how Western-based academics should collaborate in ethically, culturally responsive disability research partnerships that reflect the content of the CRPD. We highlight some of the potential issues researchers may face when commencing disability research in different cultural contexts. Our overall intent is to provide guidance on undertaking disability health res