Consent as a relational engagement with children with intellectual disabilities—ethical conundrums and possibilities

Karmiris, Maria

doi:10.1080/09518398.2022.2061739

Cited by 4 publications

(4 citation statements)

References 21 publications

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“…Few articles address this topic, notwithstanding six mentioned this issue, namely the works of Cameron and Murphy (2007), Karmiris (2022), McDonald and Patka (2012), Morgan et al (2014), Snipstad (2022), andVan Goidsenhoven andDe Schauwer (2022).…”

Section: "Is a Form Of Discrimination And Social Exclusion Namely Bec...mentioning

confidence: 99%

“…At the same time, it is also important to note that PwID tend to be subject to persuasion by carers and family members, so, fundamentally, the team should question internally what their level of decision control will be (Cameron & Murphy, 2007). Some self-reflective questions for research teams, proposed by Karmiris (2022), include:…”

Section: "Is a Form Of Discrimination And Social Exclusion Namely Bec...mentioning

confidence: 99%

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From Tokenism To Self-Determination: Ethical Considerations in Research with People with Intellectual Disabilities

Casimiro,

Sousa,

Luz

et al. 2023

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Throughout history, several moments guided the creation of ethical principles to combat abuses in scientific research with human beings. Starting in 1947, the Nuremberg Code was developed as an answer to the atrocities committed by nazi doctors during the Second World War and had the intention of protecting the autonomy and voluntary consent of the individual. The Declaration of Helsinki was developed in 1964 by the World Medical Association after they identified flaws in the Nuremberg Code and established basic principles related to clinical research, professional care, and nontherapeutic clinical research. The Declaration adds, among others, the introduction of consent via a third party, with legal faculties to authorize the participation of someone in a process of scientific research. During the following revisions to this Declaration, some points have been added regarding vulnerable groups and/or individuals, ethical committees, privacy, and confidentiality, among others. When looking at the context of disability, in addition to the aforementioned ethical documentation, the assumptions of the “United Nations Convention on the Rights of Persons with Disabilities” have necessarily been taken into account since 2008. In particular, it postulates that the idea of “universal design” should guide the conceptualization of research processes and the creation of new products or technologies. However, the application of these premisses to the specific context of People with Intellectual disabilities (PwID) appears to still clash with socially stigmatizing views, strongly set on a medical model of disability, that tend to take no notice of their participation and the value their contribution can have for the scientific research as ethical imperatives. In this sense, this document presents a conceptual model from which proposals for ethical guidelines in research with PwID are devised. The conceptual model, presented in Part II, consists of seven groups: (1) accessibility during the research process, where topics such as reasonable adaptations, feasibility, diversity and representation, good practices, and barriers are presented; (2) power imbalances, namely with regards to asymmetric power, tokenism, and gatekeeping; (3) vulnerability, both as a form of exclusion and power, along with the risks associated to it; (4) self-determination in scientific research, collaborative groups, and consulting sessions; (5) (in)capacity to consent, specifically concerning ethical dilemmas, fluctuating ability, risk perception and assessing the ability to consent; (6) informed consent, especially to proximity, adaptations, and barriers; and, lastly, (7) methodological approaches, about ethical challenges posed by it and the opportunities it brings. After a detailed description of the thematics inherent to each group, in Part III of the document, it is possible to find, summarily, the proposed guidelines, written to facilitate operationalization in planning a research design. It is important to mention that the proposed guidelines were converted to accessible language and empirically validated in partnership with portuguese PwID. In these sense, the validation was only done for the portuguese version of the guidelines.

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Section: "Is a Form Of Discrimination And Social Exclusion Namely Bec...mentioning

confidence: 99%

Section: "Is a Form Of Discrimination And Social Exclusion Namely Bec...mentioning

confidence: 99%

From Tokenism To Self-Determination: Ethical Considerations in Research with People with Intellectual Disabilities

Casimiro,

Sousa,

Luz

et al. 2023

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“…As a researcher who has taught in segregated classrooms, I offer this contribution as one way to critically examine one aspect of my own complicated entanglements as a teacher and a researcher in the field of elementary education. Elsewhere, I have explored some of the ethical conundrums that are necessarily inescapable within a researching/learning experiences that occur in relationships within classrooms (Karmiris, 2022). To put it differently, the example and analysis I engage in here represents a very small fragment of the ways my participants and I learned with and from each other.…”

Section: Reimagining Childhoods Through Reading Silences/silent Readingsmentioning

confidence: 99%

Reading silences/silent readings: Disrupting the hegemony of voice in research with disabled children

Karmiris

2023

Childhood

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By referring to an example from my doctoral research with children labeled and diagnosed with intellectual disabilities, I make a case for the ways that reading silences and silent readings within research are not only necessary but integral to refusing the claims of western colonial logics while also attending to the circulation of power imbalances within research processes. One of the key aims is to consider how embodied knowledges might increase access and inclusion of disabled children in knowledge production.

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“…Por outro lado, é de importância referir também que PcDI tendem a estar sujeitas a persuasão por parte de cuidadores e familiares, sendo fundamental a equipa perguntar-se qual o seu nível de controlo de decisão (Cameron & Murphy, 2007). Algumas perguntas autorreflexivas para as equipas de investigação, propostas por Karmiris (2022), incluem: a) O que são práticas de salvaguarda? b) Quem é que faz parte do grupo de pessoas que precisa de ser salvaguardado?…”

Section: "Um Dos Modos De Empoderamento é Através Do Respeito E Confi...unclassified

Do Tokenismo à Autodeterminação: Considerações Éticas na Investigação com Pessoas com Deficiência Intelectual

Casimiro,

Sousa,

Luz

et al. 2023

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Ao longo da história foram vários os momentos que nortearam a criação de princípios éticos para a investigação científica com seres humanos, de forma a combater abusos. Iniciando-se em 1947, o Código de Nuremberga foi desenvolvido após as atrocidades cometidas por médicos nazis durante a Segunda Guerra Mundial e protege a autonomia e o consentimento voluntário da pessoa. A Declaração de Helsínquia, constituída em 1964, foi desenvolvida após a Associação Médica Mundial notar falhas no Código de Nuremberga e estabelece princípios básicos relacionados com a investigação clínica e o cuidado profissional e a investigação clínica não terapêutica. A Declaração acrescenta, entre outros, a introdução do consentimento por outrem, com habilitação legal para autorizar a participação de outra pessoa num processo de investigação científica. Durante as subsequentes revisões desta declaração, já foram adicionados pontos relativos a grupos e/ou indivíduos vulneráveis, comitês de ética, privacidade, confidencialidade, entre outros. Ao observarmos o contexto da deficiência, à documentação ética mencionada, junta-se necessariamente, e desde o ano de 2008, os pressupostos da Convenção sobre os Direitos das Pessoas com Deficiência da Organização das Nações Unidas (ONU). Em particular, no que se refere à ideia de “desenho universal” que esta postula, enquanto devendo nortear a concetualização dos processos de investigação e de criação de novos produtos ou tecnologias. No entanto, a aplicação destas premissas ao contexto específico das Pessoas com Deficiência Intelectual, em particular, parece ainda embater em visões sociais estigmatizantes, fortemente assentes num modelo médico da deficiência, que tende a descurar a participação das mesmas e o valor do seu contributo para a investigação científica enquanto imperativos éticos. Neste sentido, o presente documento apresenta um modelo conceptual e as propostas de guidelines éticas que dele decorreram para a investigação com Pessoas com Deficiência Intelectual. O modelo conceptual, exposto na parte dois, agrega-se em sete grupos: (1) acessibilidade do processo de investigação, onde se abordam temas como adaptações razoáveis, exequibilidade, diversidade e representatividade, boas práticas, e barreiras; (2) os desequilíbrios de poder, nomeadamente relativos ao poder assimétrico, tokenismo e gatekeeping; (3) vulnerabilidade, enquanto forma de exclusão e de poder e os risco a si associados; (4) autodeterminação relativa à investigação científica, grupos colaborativos e a sessões de consultoria; (5) incapacidade para consentir, especificamente sobre os dilemas éticos, flutuações de capacidade, perceção de risco e avaliação da capacidade para consentir; (6) consentimento informado, em relação à proximidade, adaptações e barreiras; e, por fim, (7) abordagem metodológica, no que concerne aos desafios éticos colocados pela mesma e as oportunidades que dela advêm. Após uma descrição detalhada sobre as temáticas inerentes a cada grupo, na parte três do documento, é possível encontrar, de modo sistematizado, as propostas de guidelines, escritas tendo em vista uma operacionalização facilitada no planeamento de um desenho de investigação. É importante relevar que, como próximos passos, as propostas de guidelines serão convertidas em linguagem acessível, por forma a serem validadas empiricamente junto de Pessoas com Deficiência Intelectual.

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Consent as a relational engagement with children with intellectual disabilities—ethical conundrums and possibilities

Cited by 4 publications

References 21 publications

From Tokenism To Self-Determination: Ethical Considerations in Research with People with Intellectual Disabilities

From Tokenism To Self-Determination: Ethical Considerations in Research with People with Intellectual Disabilities

Reading silences/silent readings: Disrupting the hegemony of voice in research with disabled children

Do Tokenismo à Autodeterminação: Considerações Éticas na Investigação com Pessoas com Deficiência Intelectual

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