National Ethics Advisory Committee
Kāhui Matatika o te Motu
Research involving disabled people is as important as research with all other groups. As with health research more generally, equitable access is crucial to ensuring that disabled people receive the benefits of research and are given every opportunity to participate (United Nations Convention on the Rights of Persons with Disabilities 2006).
At present, there is a lack of data about disabled people, their lives, and their needs that would allow researchers to meet their obligations to disabled people. This indicates a problem of research access for disabled people. In 2013, 24 percent of New Zealanders identified as disabled;[1] this inequity therefore represents a significant gap in our collective knowledge. Disability research has a role to play in this regard: it focuses on our ‘disabling society’, and on the enabling, rather than the curing, of people living with impairments.
The history of exploitation in research involving disabled people means that researchers must carefully consider how they conduct research in this area. Researchers must achieve a balance, respecting a disabled person’s right to access research and its benefits on the one hand, and being aware of the potential for exploitation on the other. Paternalism and exploitation are avoided when researchers align their conduct with the general principles laid out in Article 3 of the United Nations Convention on the Rights of Persons with Disabilities 2006(external link) (the Convention), which are referenced throughout this chapter, and the Te Ara Tika principles.
5.1 Researchers must recognise the intersectionality of human identity, and that some people identify with multiple ethnicities and social groups, including disabled people. Disabled people are inextricably situated within other groups, for example tāngata whaikaha (disabled Māori).
5.1.a Researchers should recognise that women, those from the LGBTQI community, and indigenous groups with impairments are subject to multiple forms of discrimination, and strengthen measures to ensure their full and equal enjoyment of human rights in line with the Convention’s call for “Non-discrimination” United Nations Convention on the Rights of Persons with Disabilities 2006(external link)
The ‘social model’, as the basis of disability research, recognises that people are impaired by their bodies and disabled by their social and built environments; disability is not something possessed by the individual, but something imposed by an exclusive society. The social model holds that disability occurs when one group of people creates barriers by designing a world only for their way of living, and taking no account of the issues faced by other people. There are of course other frameworks for understanding disability. Other examples include the identity model, where disability is thought of as an identifier like sex or ethnicity, and the economic model, which positions disability as a challenge to an individual’s productivity (Retief and Letšosa 2018). However, at the backdrop of health and disability research ethics, the social and medical models of disability are the focus of this chapter.
It is therefore important to outline the difference between disability research, which focuses on a particular disability issue arising from the social environment, and research involving disabled people which may be medical or rehabilitative by nature (‘health research’). For example, medical interventions which appropriately target impairments may do little to address non-biological causes of disability. There is obviously a great need for health research involving disabled people, but it is imperative that researchers never cast disabled people only as subjects to be ‘treated’ or ‘cured’. Researchers should always acknowledge that disabled people are not just passive bystanders in the research process, and have many contributions to make both as researchers and participants. While the Standards in this chapter apply to both health research and disability research, many provide specific guidance on the latter.
The level of reciprocity in the research process will be greater in disability research, so it is important for researchers to identify when they are following a social methodology or an individual medical model of disability. The main departure of disability research from impairment-based health research is an understanding of “social potential [as] not dependent on correcting the disabled body, but instead made possible through institutional and material change.” (Williamson 2015)
Disability research redirects focus away from the impaired individual, allows its participants to take on a leadership role in removing social barriers, and has the ability to empower disabled researchers and participants. Research also acknowledges and validates disability issues, examines innate and naturalised biases, encourages enabling rather than disabling attitudes, and fosters respect for the “difference and acceptance of disabled people as part of human diversity and humanity” (United Nations Convention on the Rights of Persons with Disabilities 2006).(external link)
The importance of recognising the social determinants of disability has been recognised internationally. Under the United Nations Convention on the Rights of Persons with Disabilities 2006(external link), there is a general obligation on states parties ‘To undertake or promote research and development of universally designed goods, services, equipment and facilities…which should require the minimum possible adaptation and the least cost to meet the specific needs of a person with disabilities’ and ‘To undertake or promote research and development of…new technologies, including information and communications technologies, mobility aids, devices and assistive technologies, suitable for persons with disabilities’ (Ibid.).[2] Research in New Zealand has a responsibility to address the problems confronted by disabled people in a way which respects the social origins of those problems.
Historically, there has been a significant power imbalance, beyond even the usual asymmetry between the researcher and the researched, in the relationship between researchers and disabled people. Social inequities maintain this imbalance to varying degrees. It is therefore of high importance that disabled people are involved in study design whenever and however possible, in line with Article 4.3 of the Convention. Researchers should be alert to the fact that disabled people are sometimes excluded, and failed to be included, in research designs intended to cover a ‘general’ population (Iphofen 2009).
Their primary aim should be co-design; that is, research that is designed in collaboration with disabled people themselves. Co-design fosters trust and builds relationships with participants, which is a fundamental part of ethical research.
5.2 Researchers should strongly consider a participatory approach when conducting disability research, whereby appropriate engagement with prospective participants and relevant stakeholders helps them frame research questions, devise methodology, interpret findings, avoid an ‘ableist’[3] bias, and improve the overall efficacy of the study (National Disability Authority 2009).
5.2.a Researchers should consider the importance of a disability advisory group or researcher when reviewing the research design for disabling aspects.
5.2.b Researchers should not use participatory approaches at the expense of scientific validity. However, the social focus of disability research makes co-design highly important (ibid.).
5.3 Researchers should consult with disabled people and relevant stakeholders, such as disabled people’s organisations, when their research focuses on a disability issue, following the maxim: ‘Nothing about us, without us.’
5.3.a For example, researchers may need a disability perspective when developing an algorithm to diagnose an impairment.
5.4 Researchers should consult with disabled people early in the design process, to ensure that their study is best placed to answer the research question. Consultation and/or collaboration is more likely to result in effective and ethical research, enhance well-being, prevent harmful assumptions or bias, and reduce stigmatisation.
5.4.a Collaboration is also beneficial in that it can build the research/participation capabilities of disabled people.
5.5 Researchers should consider ways in which disabled people can be included in their research strategy (see Chapter 11 Research conduct), taking into account:
5.6 Regardless of the level of co-design and consultation researchers decide on, researchers should appreciate that research is a reciprocal relationship. At the very least, disabled people should benefit from research they are involved in, and their expertise and time should not be taken for granted. It may be appropriate for researchers to offer participants a koha.
5.7 Researchers should understand the cost of disability research, and that in order to be of benefit to disabled people it is likely to incur greater cost than other forms of research, given that facilitating the inclusion of disabled participants may be more complex. Researchers need to have sufficient financial resources to ensure that their research is ethical, taking into account activities before, during and after the research.
5.7.a Current funding models often do not allow researchers to adequately communicate with the communities they are researching.
5.7.b Researchers should be aware that the recruitment of participants into disability research has been historically difficult, and may take more time than the equivalent process in other kinds of research. Study timeframes should allow for this, and recruitment approaches must accommodate the needs and lifestyles of disabled people.
5.8 Some disabled people are approached for research on a regular basis, and researchers must be cautious of research fatigue.
5.8.a Researchers should also be aware that disabled people’s organisations are frequently asked to share research information and identify participants, but do not always have the necessary resources to do so.
Article 12 of the Convention requires that disabled people enjoy equal recognition as persons before the law, and the rights that this entails. Like all research participants, disabled people should be safeguarded from extortion and undue influence, though this must be proportional to the degree to which it affects a person’s ability to act on their will and preferences (United Nations Convention on the Rights of Persons with Disabilities 2006).[4] Researchers will need to weigh protective measures against disabled people’s right to take risks when engaging in life experiences, and demonstrate a respect for “inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons (Ibid.).”[5]
5.9 As a default position, researchers should take all people, regardless of disability, as having the capacity to provide informed consent[6].
5.10 Where researchers have reasonable grounds to believe that a disabled person cannot by themselves give informed consent, they should provide that person with access to the support required to do so. It should be noted that almost any person, with the right support, is capable of providing informed consent.
5.11 A person-centred, supported decision-making model should involve:
5.11.a For the purposes of these Standards, there are three groups of people researchers should consider when obtaining informed consent: 1) those who can give informed consent, 2) those who require assistance to give informed consent, and 3) those who cannot give informed consent. An unconscious person is an example of someone who cannot give informed consent, and marks the limit of the supported decision-making model.
5.12 The level of oversight of the process of determining an individual’s capacity to consent should be proportional to the risks and complexity of the research. Disability research is social research, so clinical oversight may not necessarily be required. However, the determination should be evidence-based and, where possible, external; leaving this decision entirely to the researcher may introduce bias.
5.13 Researchers should take steps to accommodate the specific needs of disabled people, to make their research accessible and promote inclusivity. These steps could include:
5.14 Researchers should ensure they themselves are accessible, and that they supply all participants with a means of making contact with the study team. Researchers should not assume that participants have mobile phones or email addresses.
5.15 Researchers should ensure that people are equally eligible to participate, regardless of their disability or any other aspect of their identity.
5.15.a For example, if disabled people are to benefit from new medicines, they should be able to participate in clinical trials. Likewise, if disabled people are subject to a particular public policy, they should be able to participate in relevant qualitative research.
5.15.b Moreover, researchers should acknowledge that disabled people have much to give in research, and that a lack of fair representation is to the detriment of the public good.
The analysis and dissemination of data is an important part of the research process, and is how New Zealand will fulfil its obligation to remove social barriers and further empower disabled people. Central to the ethical treatment of disability data is the Convention’s principle of “Accessibility” (United Nations Convention on the Rights of Persons with Disabilities 2006).[8]
5.16 Researchers should ensure that they disseminate their research findings in a way which reaches the group they are engaging with. Dissemination is part of the research process and must be conducted under the same ethical principles (see ‘Communicating and disseminating research results’).
5.17 Researchers should publish the results of disability research in open-access journals. They should limit sponsor publication requirements wherever possible, and ensure that data that is of relevance to a disability issue is not concealed by a paywall.
5.17.a Concerns around intellectual property should not limit disabled people’s access to disability research data. The Marrakesh Treaty (2013), for example, calls for relevant works to be publicly available, in an accessible format, to disabled people.
5.18 Researchers should be conscious of the digital divide (the gulf between those with easy access to the internet and those without it), especially in disability research. It should not be assumed that everyone has access to specific technologies, such as mobile devices, and poverty barriers should be considered. Availability does not imply accessibility.
5.19 Researchers should publish their data in an accessible format in both digital and physical forms, taking into account the specific needs of disabled people.
5.19.a Researchers should consider making large-print documents, and not just standard PDFs, available.
5.20 Researchers should disaggregate data as appropriate and use it to meet the obligations outlined in this chapter, and to address the barriers faced by disabled persons in exercising their rights (United Nations Convention on the Rights of Persons with Disabilities 2006).
5.21 Researchers should be cognisant of the potential harms of reporting, and take care in interpreting and publishing study results. Researchers should give due consideration to whether they have answered their study question.
5.22 When using artificial intelligence in disability research – for example as a diagnostic tool – researchers should consider the limitations and potential biases of AI systems, and take the associated ethical issues into account (see ‘Health data and emerging technologies’).
5.22.a The use of big data such as Statistics NZ’s Integrated Data Infrastructure in disability research is not without its problems. Definitions themselves can be disabling. If researchers inadequately define ‘disability’ for their purposes, then the results of big data research may be inaccurate or even harmful for disabled people. Disabilities do not exist in isolation, but they occur in tandem with other social problems. Researchers must take care when examining the cause of a social problem to avoid identifying a ‘disability problem’ where one does not exist.
Disability research in particular benefits from the involvement of disabled researchers, who bring credibility and authenticity to their projects. However, there is currently a paucity of disability research conducted by disabled researchers. Economic models can be structurally biased when focussed solely on medical productivity, causing unequal access for disabled researchers. Additionally, the higher costs sometimes accrued by disability research are a barrier. To encourage ethical disability research, disabled researchers need to be economically enabled to enter the research field and to conduct their studies.
5.23 Whether it is focused on a disability issue or not, research conducted by disabled people should give due consideration to the study design, and to the reasonable accommodations needed for disabled researchers to be successful in their work.
5.24 Where appropriate, those involved in the research design should consider engaging support workers to carry out tasks relating to the research, as an extension of disabled researchers’ autonomy.
5.25 Disabled researchers should receive support to navigate the research space free of discrimination.
[1] 2013 census.
[2] Article 4.
[3] “Ableism is a set of beliefs or practices that devalue and discriminate against people with physical, intellectual or psychiatric disabilities and often rests on the assumption that disabled people need to be ‘fixed’ in one form or the other” – Center for Disability Rights(external link).
[4] Article 12.
[5] Article 3.
[6] See Right 7(2) of HDC Code of Rights
[7] For example, the IHC(external link) provides intellectual disability support services and holds workshops on supported decision-making.
[8] Article 3.
