Applying the ‘Human Rights Model of Disability’ to Informed Consent: Experiences and Reflections from the SHAPES Project

Author:

Lombard-Vance Richard12,Soye Evelyn3,Ferri Delia23ORCID,McEvoy Emma23,MacLachlan Malcolm12ORCID,Sarlio-Siintola Sari4

Affiliation:

1. Department of Psychology, Maynooth University, Maynooth, W23 X04D Co. Kildare, Ireland

2. Assisting Living and Learning Institute, Maynooth University, Maynooth, W23 X04D Co. Kildare, Ireland

3. School of Law and Criminology, Maynooth University, Maynooth, W23 X04D Co. Kildare, Ireland

4. Department of Research and Development, Laurea University of Applied Sciences, 01300 Vantaa, Finland

Abstract

Understanding the complexity of informed consent processes is critically important to the success of research that requires participants to test, develop, or inform research data and results. This is particularly evident in research involving persons experiencing neurodegenerative diseases (e.g., Alzheimer’s disease, dementia) that impair cognitive functioning, who according to national law are considered to have a diminished capacity, or to lack the capacity, to consent to research participation. Those who would potentially benefit most from applied research participation may be excluded from participating and shaping data and outcomes. This article offers insights into challenges faced by the Smart and Healthy Ageing through People Engaging in Supportive Systems (SHAPES) Project in obtaining the consent of older persons, including older persons with disabilities. The promotion of continuing health, active ageing, and independent living is central to SHAPES, requiring project partners to reflect on traditional informed consent approaches to encourage the full, cognisant participation of older persons with disabilities. We examine how this issue may be addressed, with reference to the inclusive approach of SHAPES. In respecting the inalienable legal capacity of all legal persons, SHAPES uses the UN Convention on the Rights of Persons with Disabilities (CRPD) and the human rights model of disability as part of the theoretical framework. A novel, inclusive, representative informed consent framework was designed and is detailed herein. This framework provides significant opportunity to advance the inclusion of persons with disabilities or those experiencing neurodegenerative diseases in innovative research and is readily transferable to other research studies. The SHAPES approach is a substantial contribution to research on informed consent, demonstrating the utility of the human rights model of disability in facilitating the full research participation of target populations.

Funder

Horizon 2020 Framework Programme of the European Union for Research Innovation

Publisher

MDPI AG

Subject

General Engineering

Reference72 articles.

1. European Commission, and Statistical Office of the European Union (2020). Ageing Europe: Looking at the Lives of Older People in the EU: 2020 Edition, Publications Office.

2. European Commission (2020). Report from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions on the Impact of Demographic Change. (COM (2020) 241 Final), European Commission.

3. World Health Organization (2001). International Classification of Functioning, Disability and Health, World Health Organization.

4. United Nations Special Rapporteur on the Rights of Persons with Disabilities (2019). Report of the Special Rapporteur on the Rights of Persons with Disabilities (A/74/186), United Nations.

5. United Nations (2006). Convention on the Rights of Persons with Disabilities, United Nations.

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