From Tokenism To Self-Determination: Ethical Considerations in Research with People with Intellectual Disabilities
Authors: Casimiro Cátia , Sousa Carla , Luz Filipe , Oliveira Jorge , Loureiro Ana 
Published: April 2024

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.