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

Abstract

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 research that upholds the CRPD. We hope that this article is particularly helpful for researchers commencing disability research in different cultural contexts and for the research ethics committees that will play a critical role in approving proposed research.^25,26,35 We conclude the article with 5 recommendations, and we suggest that dialogue is fundamental in the pursuit of a just and ethical approach.

DEVELOPMENT OF ETHICAL GUIDELINES

The Nuremberg Code of 1947 and the Declaration of Helsinki (1964 and amendments) have informed the modern shape of human research ethics in Western Europe and North America.^{16,32,33,36–38} These guidelines, which were developed initially for medical research, aimed to protect people from exploitation in the name of research by encapsulating the principles of protection and respect for human participants, including autonomy and informed consent, justice, beneficence, and nonmaleficence.^18,24,26,30 The principles underlying these requirements accord in theory with the principles of the CRPD, which endorses the autonomy of people with disabilities through freedom of choice and active involvement in decision-making processes (Article 3, and noncoercive practices, Article 4).

That these guidelines are necessary has been demonstrated by research wherein the rights of vulnerable populations have not been protected.^1,39–42 In international contexts, there have been concerns about the exploitation of poor people, the misrepresentation of participants, and community harm.^18,43 These issues are often further compounded by complicated political, social, cultural, and economic agendas,^17,18,34 which can create tensions between theoretical expectations of the Western-based ethical codes of conduct and the practicalities of the situated realities of participants.^18,43,44

Similarly, in disability research, there has been debate about the concept of disability, with some scholars framing disability within an individualized medical model and others focusing on society as the locus of disability.^7,45 The holistic nature of the social model of disability is related to the holistic concepts of health, which are not limited to the provision of “health care,” but include the social determinants and social gradients of health. These debates contributed to the International Classification of Functioning, which unlike measures such as disability-adjusted-life-years, attempts to bridge the medical and social views of disability by recognizing that research, policy, and practice can be placed on a continuum between the medical and social models of disability.^45–48

More recently, disability and public ethics debates have shifted to include issues of justice, equality, and human rights.^{39,46,49–51} Disability health research ethics intersect with the CRPD.⁴⁶ For example, both the International Classification of Functioning and the CRPD recognize the universal vulnerability and interdependence of people.^13,20,46 However, current ethical governance processes, although designed to protect, are often seen as paternalistic and contrary to the underlying principles of inclusive research.^{18,25,29,40,52,53} Furthermore, the requirements laid out in procedural ethics arguably assume that experiences, perspectives, and meanings held in Western societies are universal, neutral, and normative, yet such concepts may be translated differently by different societies.^37,54 Because people with disabilities are not homogeneous, and the way in which research ethics are interpreted is context-dependant,^18,44 we provide some examples before presenting recommendations in light of the CRPD.

RESPECT FOR PERSONS

Informed consent is the cornerstone of respect for persons. It encompasses the notions of autonomy, rights, and capacity to make informed choices.^18,55 In some contexts, however, obtaining genuine informed consent can be problematic, in part because of the historical, sociopolitical, and cultural context, and in part because of certain types of disabilities. In some contexts, for example, high status is conferred on researchers, especially if they are seen to be from a more advanced economy.⁵⁶ The consequent perceived differentials in knowledge and authority between researchers and participants can mean agreement is given out of respect, which makes assessing if genuine informed consent has been obtained problematic.⁵⁶ Similarly, in oppressive states where citizens may fear reprisal for failure to volunteer, or where they may not fully understand they have the right to refuse, the assessment of the nature of consent is challenging.^18,57 Often in such settings, the local government acts as a gatekeeper to participants, implicitly acting as a form of coercion. Furthermore, a requirement to have university logos or show that the research has the support of the government can prevent participants from believing their participation is voluntary.³⁹ In repressive states, for some, signing a consent form can be frightening, or potential participants may not be able to write their signature; therefore, alternative ways, such as verbal consent, need to be used.

Challenges such as these are frequently amplified when the research population is people with disabilities, particularly if they experience stigmatization in their society, and as a result, have low self-esteem, and real or perceived community devaluing and lack of negotiating power.¹⁸ Some have also argued that the concept of informed consent is inherently culturally bound, based on Western values of individual autonomy, self-determination, and freedom, and may not translate across cultures.^{17,32,58–60} In some communities, it may be culturally more appropriate to provide information to a group. In other cases, the male head of a family may be expected to agree to research on behalf of a family member or people may wish to discuss the research with others important to them before consenting.⁶¹ Thus, the processes for gaining informed consent with persons with disabilities should include respect for the particular sociocultural context, and the researcher should be alert to the potential unseen pressures to which potential participants might be subject.^18,20,27

Assessing competence to give informed consent can also be difficult.^27,62,63 This can be the case in low-resource settings or in contexts where persons with disabilities are discriminated against in education, or are not used to being given the opportunity to make decisions. In some low-resource settings, high levels of malnutrition, prolonged and unassisted labor, asphyxia, low birth weight, and injuries during birthing mean that the prevalence of poor cognitive and physical functioning is high. For such participants, providing easy to process information and short breaks can enhance participation. When people have cognitive impairments, including several people in providing consent by proxy has been proposed as one way of more rigorously obtaining consent.⁶⁴ In some settings, however, the proxies themselves may not understand the right to refuse, as discussed previously. Furthermore, the use of proxies arguably disempowers people and is not compatible with the research methods implied in the CRPD.

Regardless of the type of disabilities, researchers should first assume a person has the capacity to make decisions, and second, find the best way to provide information and check understanding. This includes making appropriate provisions related to information and communication, including those related to speech, hearing, sight, or cognitive impairments, and remembering that people with disabilities in low-resource settings are likely to have less access to assistive devices than their more affluent counterparts. This may include, for example, providing information using photographs, which are often more effective in low-resource settings where people have limited access to print media. Informed consent should be viewed as an emergent process, with initial consent given followed by subsequent agreements as the research proceeds, with ongoing assessment of capacity in light of the individual’s context and the specific research. The intent should be to develop a shared understanding of what is involved at all stages of the research process, with capacity demonstrated over time.^16,28,65,66

JUSTICE

The commitments of the CRPD mean that everyone with disabilities in the population has a right to be accurately represented. Thus, research risks and burdens must not be borne disproportionately by vulnerable groups, nor should the more privileged disproportionately reap research benefits.³⁵ Thus, it is important that research does not inadvertently or otherwise promote certain groups of people with disabilities over others or exclude people with disabilities or subgroups within the population. A case in point is the recruitment of adults with disabilities for research.^27,28,62 Often in disability research, the sample is drawn from local disability organizations’ clients, who may not be representative of the general population.⁶⁷ Another example is household surveys, in which people in institutions or certain other groups are excluded, because it is too difficult to provide additional resources, such as transportation for supporters or sign interpreters. Care must be taken, however, especially in poor communities, because if payments are excessive, they are also potentially coercive.

Questions of procedural justice must be kept in mind when powerful institutions, such as universities or government departments, define what constitutes ethical and proper research. As discussed previously, the requirements of informed consent can be a barrier to certain groups of people with disabilities, leading to their exclusion from research, or where certain rules are mandated for doing research with specific groups of people (e.g., people with psychiatric disabilities). This can limit access to participants and reinforce stigma. This can also constitute a form of injustice by not only failing to recognize the experiences of some groups of people, and in doing so, potentially misrepresent the aggregate view, but also depriving the excluded groups from the benefits of research.^28,68,69 For an account on how nonrecognition and misrecognition can be forms of harm, and ultimately, of injustice, see Talyor’s seminal essay, “The Politics of Recognition.”⁷⁰ Similarly, questions of procedural justice may arise when Western-based academics claim to speak for “their” research participants, but they may lack legitimacy in the eyes of the population on whose behalf they claim to speak.^18,31 Procedural justice also means research decisions should be made transparently, as emphasized in the CRPD (see, for example, Article 3, Article 4, Article 21, and Article 22).

TOWARD A DIALOGICAL APPROACH

As per the social model of disability that is the foundation of the CRPD, research with people with disabilities should be inclusive and address their right to participation in processes that may affect them.^18,27,29,71 This means involving people with disabilities in all aspects of the research process and enabling them to develop the skills to challenge the status quo.^{18,29,36,66,72} This is related to the ethical principle of beneficence, which ensures that research does not reproduce societal prejudices or deny the capabilities of people with disabilities.^18,72 Ethics committee processes, however, do not always promote research conditions that enable inclusive research.³⁰ For example, ethics approval processes usually require the presentation of a research protocol and instruments before the research commences. This can potentially disadvantage inclusive research processes in which the design emerges through a process of negotiation.^28,33

Our discussion points to the insufficiency of procedural ethics as a means of ensuring the ethical practice of conducting research with people with disabilities. We do not want to detract from the necessity of forms of procedural ethics; we want to highlight that more is necessary if research with vulnerable groups is to be genuinely ethical. Beyond the dictates of procedural ethics, it is incumbent upon researchers and research ethics committees to recognize that they, as do we all, have biases and prejudices, and to question their position as experts.^{18,20,31,56,72} This is in keeping with the Gadamerian idea that we are all necessarily prejudiced—we are all particularly situated and view the world in terms influenced by our own socioeconomic, cultural, and historical worldviews.⁷³ As such, genuine understanding requires that we are willing to shift from our starting positions and attempt to understand the worldviews of those with whom we are in dialogue.⁷³

RECOMMENDATIONS

The CRPD unequivocally advances equality, inclusiveness, and the elimination of discrimination in all facets of the lives of persons with disabilities. Consequently, the provisions of the CRPD extend and expressly apply to academic research with all persons with disabilities. Thus, all researchers who are from or undertake research in countries that are signatories to the CRPD have obligations to protect the human rights of people who may be exploited in the research process because of disability. Without such participation, the validity of the research is questionable.¹⁸ We provide 5 practical recommendations for scholars commencing research and for research ethics committees, on how to incorporate the CRPD’s requirements into ethical research practices with persons with disabilities in different cultural contexts.

Before providing our recommendations, however, they must be qualified. Levinas⁷⁴ made the distinction between justice and ethics by conceptualizing the former in terms of coercive relations involving multiple parties, and the latter in terms of the manner in which one individual approaches another. Ultimately, ethical research occurs in Levinasian terms when individual researchers genuinely engage in critical reflection and attempt to come to some genuine form of understanding with their intended research participants and their contexts. Although it is incumbent on the research community, especially those in relatively powerful Western institutions, to ensure that research involving potentially vulnerable groups is just and ethical as far as possible, and that this is underlain by rigorous procedures, ethics are ultimately individual. However, to progress ethical research informed by the CRPD, we also recognize that this goes beyond the individual, and that Western-based donors and universities can play a crucial role in progressing and appropriately resourcing ethical, rights-based international research collaborations aligned with the provisions of the CRPD.

Preliminary Analysis and Early Engagement

In considering research proposals related to persons with disabilities in cross-cultural contexts, research ethics committees must be satisfied that the researcher has demonstrated sufficient preliminary research and understanding of the research context. This should include a demonstration of an understanding of the relevant socioeconomic, historical, political, and cultural contexts; language and literacy levels; the cultural concepts of the family; and disability. This can be done through reviewing existing informally published and published literature from different sectors, including, for example, health, education and labor, social welfare (but there may be missing or inaccurate data⁵), and talking to in-country stakeholders.

In addition, because most researchers publish their proposed research programs in advance, researchers can engage early with in-country stakeholders. For example, early engagement with local persons with disabilities as colleagues or fellow researchers, including Disabled Peoples Organizations, rehabilitation services, nongovernment organizations or university partners, can help build the researcher’s cultural awareness and improve the quality of engagement over time.¹¹ This is particularly important in contexts in which, for historical reasons, Westerners are often perceived as experts, and power imbalances can subsequently and improperly manifest or perpetuate the existing status quo, which works against the principles embodied in the CRPD.

Researchers should be required to demonstrate that they have undertaken meaningful engagement in developing research proposals and have followed the principles contained in the CRPD. When ethical guidelines potentially preclude entering the field before ethics approval, the principles contained in the CRPD can be used. In addition, collaborating with communities is often an important part of checking that the proposed research has research merit, including its contribution to knowledge and understanding, and the potential benefit to the community.⁷⁵ In contacting stakeholders and asking them to identify other people with disabilities as potential participants or collaborators, care should be taken not to breach the privacy and confidentiality of the potential research participants.

Proposals should show evidence of careful consideration of issues, such as how to include local researchers with disabilities in meaningful ways and opportunities for participatory research. There should also be evidence of consideration of issues, such as potential barriers and solutions to participation, obtaining culturally appropriate and genuinely informed consent, confidentiality, inclusive sampling methods and appropriate data collection methods, and dissemination of findings. As far as possible, this early engagement should include face-to-face communication, particularly where access to the Internet, other telecommunications networks, or the language of the researcher are restricted to an elite in-country minority. The proposal could include collaborating with local researchers with disabilities as research consultants.

Ensure an Understanding of CRPD Provisions

To effectively develop and review disability research proposals, researchers and reviewers should have training in the CRPD, its underlying principles, legal requirements, and language. This also raises the question of who does the training, whose values are promoted, and so forth. Training in the CRPD and its implications in practice can be sought from local disability advocate organizations and alliances or Disabled People’s International.

It is particularly important that researchers understand and consistently use disability inclusive, rights-based language that accords with the CRPD because nothing else defines or promotes disability rights–based academic and societal culture as distinctly as the language used in this Convention. Research ethics committees must be satisfied that researchers have demonstrated an understanding of the CRPD’s provisions and the social model of disability, and have applied these factors to their research proposal. When a researcher plans to use an interpreter, we also recommend training on how to work with interpreters. In addition, interpreters themselves may need training on the CRPD, particularly in LMICs where interpreters and translators are often not organized into professional groups with strict codes of conduct and accreditation processes. Interpreters may also need additional training in how to interpret to facilitate lip-reading. In addition, it should be kept in mind that accredited translators living in the researcher’s home country may be unfamiliar with the contemporary language use in the country of the planned research. In addition, consistent with the principles of the CRPD and the ethical principle of beneficence, the research should be accompanied by action to change oppressive policies and societal structures.^18,72

Promote Partnerships With Researchers in LMICs

The CRPD provides an advocacy tool to promote research partnerships between academics, and particularly, academics with disabilities from high-income countries and LMICs; many donors support building research partnerships and capacity building across national borders. Capacity building efforts should expressly focus on building the capacity of local researchers with disabilities and local research ethics committees. Furthermore, capacity building is a 2-way process of (1) building local capacity and (2) learning more about the local context and worldviews.¹¹ Every opportunity should be afforded, particularly for in-country collaborators, to attend and present findings at relevant conferences, to travel to the collaborating country for work meetings, and for educational opportunities. This will allow the research to be made available for scrutiny, as well as contributing to public knowledge and understanding of people with disabilities and capacity building.⁷⁵ Similarly, we strongly recommend that research experiences be published, and that critical examination of the barriers and opportunities, successes and challenges take place, so a respectful discourse of learning can grow in the disability, public health, and development literature, which would benefit other international research partnerships and strengthen methodological approaches.

Ensure Local Ethics Review and Oversight Processes

The CRPD insistence on the right of people with disabilities to actively participate in social, cultural, and political life, and to be involved in issues that affect them (among other provisions, Article 21), can be used to check that tertiary institutions take appropriate steps to ensure their research ethics committees include representation of people with disabilities. Furthermore, to advance context-appropriate research standards, proposed research should be reviewed and approved by in-country research ethics committees where they exist, or if not, by relevant ministries, as well as the researcher’s home-country institution. If appropriate research ethics committees do not exist, local reference groups or steering committees with adequate representation of people with disabilities can provide ethical review, as well as community oversight and ownership, and on-going monitoring.⁶⁰ Even where research ethics committees do exist, they may not have adequate representation of people with disabilities; again, local reference groups with people with disabilities can be established to provide oversight. This is an example of building the structures necessary for a more just form of research. This example of procedural justice can be further strengthened by ensuring that in-country research ethics committees have the same scope of powers as those vested in committees in tertiary-level university ethics review committees informed by Western-based concepts of ethical research. Ideally, processes should also be put in place for negotiating solutions where there are differences in opinion between Western-based research ethics committees and in-country committees. Although obtaining local ethics approval can be time-consuming, early engagement can help minimize these differences.

Engage in Critical Reflection

Finally, an ethical approach to research can only come from an individual researcher who is committed to a genuine attempt to understand research participant(s) in their particular context. This starts from an acknowledgment of one’s relative power and prejudices. It includes critical reflection on the interpersonal aspects of research and the personal interactions between the researcher and the participant. Researchers should be aware of the local, specific, contextual, and contestable issues within a given environment throughout the research cycle.^20,37,44 Researchers must practice critical reflection and recognize that there can be an incongruence between their own cultural views of research and the meanings of disability and those of the culture in the research setting. Researchers should take care not to project their own cultural values onto the research process.²¹ Strategies, such as reflective research journals and training on the CRPD, can help researchers identify and reflect on their own biases or the cultural value systems they bring to the research.¹⁸ Ultimately, we must ensure there is meaningful representation of people with disabilities in the research process from the outset, and be constantly vigilant that the ethics process is never just a form-filling and box-ticking exercise.

CONCLUSIONS

The CRPD provides a solid foundation for ethical, inclusive research with people with disabilities. However, in advocating the integration of a rights-based approach, we do recognize the debate around its own Western-centered genesis and construction, and the intersecting issues related to the ongoing disabling impact of colonialism on disability research.^76–79 We need to be especially vigilant not to simply replace one set of frameworks handed down from the West with another, and to recognize that a rights-based discourse is a politically sensitive one that needs to be negotiated. As researchers, we enter into a contract with participants to undertake ethical research. An explicit rights-based perspective can help bridge the gap between theoretical expectations of ethical codes of conduct and guidelines and provide a more holistic framework for ethical decision-making in the situated realities of people with disability.^20,26,39,40

Because people with disabilities are often those most in need of health care, improved social determinants, and public health research, it is imperative that such research not only occurs, especially in LMICs where it is estimated that 80% of the world’s persons with disabilities reside,⁵ but that it is ethical and fulfills, protects, and promotes the health and interrelated human rights of participants. We have given specific examples of some of the challenges and strategies that can be used to enable research to be carried out in cross-cultural contexts while maintaining ethical standards. We also point to the need for more research into how ethical issues of confidentiality, consent, justice, and benefice are enacted in ethics in practice in research with persons with disabilities in LMICs and how these concepts are perceived by research participants. Finally, we hope this article will further redress the current power imbalance between research ethics committees and researchers from Western academia and disability researchers in developing nations.