Scior, Katrina; Hamid, Aseel; Dixon, Amy; (2024) Ethical Standards Guide. UN Women: New York, NY, USA.

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Abstract

The Addressing Stigma and Discrimination Experienced by Women with Disabilities (ASDWD) project was led by the United Nations Development Programme (UNDP) and UN Women, with funding from the United Nations Partnership on the Rights of Persons with Disabilities (UNPRPD) between October 2021 and June 2023. Implemented in four countries – Pakistan, Palestine, the Republic of Moldova and Samoa – the project aimed to address key challenges in overcoming stigma, discrimination and violence faced by women with disabilities. This document outlines the guidance that was used throughout the project to minimize the risk of harm while engaging women with disabilities. The human rights based approach and the ‘Do No Harm’ principle guided the conceptualization and implementation of these guidelines. While ethical and safety recommendations for research on violence against women exist, there is little guidance specifically on engaging and working with women with disabilities. This guidance was developed though a working group that was chaired by research consultants and included representatives from all four pilot countries, who agreed on standards relating to ethical issues and data protection. The ethical guidance aimed to minimize the risk of harm at three levels: 1) the target population, including women and girls with disabilities and their family members and respective organizations of persons with disabilities (OPDs), civil society, policy and decision-makers and all others who provide data as part of their participation in this project; 2) those collecting data from the target population; 3) the organizations responsible for implementing this project. The guidance draws on four key overarching concepts: informed consent; benefit, not harm; confidentiality; and data protection/transfer. The guidance also aligns with the UN Evaluation Group’s four ethical principles of integrity, accountability, respect and beneficence.1 Finally, four key considerations are provided: Accessibility: in line with Article 12 of the UN Convention on the Rights of Persons with Disabilities (CRPD) affirming that all adults with disabilities have full legal capacity, and that people with disabilities should be provided with access to support to exercise capacity and decision-making. Safety: putting in place safeguarding measures to ensure the safety and privacy of participants and data collectors. Signposting: ensuring that the appropriate access to resources and organizations are available to women and girls with disabilities who may disclose safeguarding issues and/or need further support. Making ethical decisions: this draws on the six step model outlined by the UN Ethics Office to provide support for action in difficult scenarios.

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