“Nothing About Us Without Us” Transforming Participatory Research and Ethics in Human Systems Engineering

Williams, Anna; Gilbert, Juan E.

doi:10.1201/9780429425905-9

Cited by 18 publications

(29 citation statements)

References 1 publication

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“…We argue that researchers have to be especially careful when aiming for child-led design processes with marginalised children as, for example, younger children might not have the same vocabulary or skills to express their ideas and desires as the researchers. Researchers have to be attuned to explicitly making space for the participation of the children on their own terms (Spiel et al 2017;Williams and Gilbert 2019).…”

Section: Practical Suggestionsmentioning

confidence: 99%

In the details: the micro-ethics of negotiations and in-situ judgements in participatory design with marginalised children

et al. 2020

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Engaging marginalised children, such as disabled children, in Participatory Design (PD) entails particular challenges. The processes can effect social changes by decidedly attending to their lived experience as expertise. However, involving marginalised children in research also requires maintaining a delicate balance between ensuring their right to participation as well as their protection from harm. The resulting tensions are politically charged, affected by myriads of power differences and create moral dilemmas. We present seven case studies, drawing from two participatory design research projects. They illustrate the in-situ judgements taken to address specific dilemmas and provide nuanced insights into the trade-offs required by child-led participatory design processes. Subsequently, we identify three challenges: positioning our work to the children's carers' values, protecting ourselves, and enabling the (relative) risk-taking associated with participation for children. We call for this microethical approach to be used when reporting research ethics in practice, and as a guidance for the training of researchers and practitioners.

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Section: Practical Suggestionsmentioning

confidence: 99%

In the details: the micro-ethics of negotiations and in-situ judgements in participatory design with marginalised children

et al. 2020

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“…When conducting research on ASD people together with the technological aspects also the understanding and the respect for disability and autism as identity should be considered [43]. Indeed, ASD individuals' cognitive and communication deficits may increase their risk of vio-lation of their human rights concerning their privacy of information.…”

Section: Discussion and Implicationmentioning

confidence: 99%

Supporting autism spectrum disorder screening and intervention with machine learning and wearables: a systematic literature review

Francese

Yang

2021

Complex Intell. Syst.

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The number of autism spectrum disorder individuals is dramatically increasing. For them, it is difficult to get an early diagnosis or to intervene for preventing challenging behaviors, which may be the cause of social isolation and economic loss for all their family. This SLR aims at understanding and summarizing the current research work on this topic and analyze the limitations and open challenges to address future work. We consider papers published between 2015 and the beginning of 2021. The initial selection included about 2140 papers. 11 of them respected our selection criteria. The papers have been analyzed by mainly considering: (1) the kind of action taken on the autistic individual, (2) the considered wearables, (3) the machine learning approaches, and (4) the evaluation strategies. Results revealed that the topic is very relevant, but there are many limitations in the considered studies, such as reduced number of participants, absence of datasets and experimentation in real contexts, need for considering privacy issues, and the adoption of appropriate validation approaches. The issues highlighted in this analysis may be useful for improving machine learning techniques and highlighting areas of interest in which experimenting with the use of different noninvasive sensors.

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“…And so, what is to be done? In other work, I argue for the necessity of community-led research and development for the ethical progress of scientific inquiry into interventions and supports for autistic people (Williams & Gilbert, 2019). Here, I argue simply for attention.…”

Section: Reading Resistance Between the Linesmentioning

confidence: 99%

“…For example, in prior work, I investigated the research aims of wearable technologies for autism intervention, such as the application for Google Glass described in the NBC news excerpt above. In this survey of the wearable technology literature, I found that despite considerable interest in wearable technologies for autism, the domain of inquiry in such studies is predominantly socially normative intervention (Williams & Gilbert, 2019). Thirty percent of the studies reviewed applied wearable technologies to existing behavioral intervention.…”

Section: Metaeugenics and The Wearable Governance Of Normative Childhoodmentioning

confidence: 99%

Metaeugenics and Metaresistance: From Manufacturing the ‘Includeable Body’ to Walking Away from the Broom Closet

Williams¹

2019

Can J Child Rights

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The governance of rights is a complex project of exercising ethical discretion in a systemically unethical society. This paper troubles the efficacy of rights as governable by exposing tensions within and between the Convention on the Rights of the Child (CRC) and the Convention on the Rights of Persons with Disabilities (CRPD). Grounded in a critical disability studies perspective, I question the possibility of respecting disability as a natural part of human diversity while simultaneously proposing that disabled children have a right to intervention. Who governs the definition of “health”, of “development”, of “access”, or of “best interests”? I interrogate the function of rights-based discourses in a global culture that has yet to fully abandon the project of eugenics. I present disturbing relations between researcher and subject in case studies of wearable technologies for autism intervention as a challenging site of analysis for the ethics of these interventions. I call us to question who truly benefits when we engage in the production of ‘includable bodies’ rather than the deconstruction of exclusionary environments.

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“Nothing About Us Without Us” Transforming Participatory Research and Ethics in Human Systems Engineering

Cited by 18 publications

References 1 publication

In the details: the micro-ethics of negotiations and in-situ judgements in participatory design with marginalised children

In the details: the micro-ethics of negotiations and in-situ judgements in participatory design with marginalised children

Supporting autism spectrum disorder screening and intervention with machine learning and wearables: a systematic literature review

Metaeugenics and Metaresistance: From Manufacturing the ‘Includeable Body’ to Walking Away from the Broom Closet

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