Informed consent

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"Survivors need to know how the documenter will use our story and what their objective is. If they are publishing it, what will they publish? How do they ensure our privacy? What will happen to us or the impact on us after telling our story? What rights do we have?" - Mina, Nepal [1].

Obtaining informed consent is an ethical and often legal [2] obligation that applies to any intervention (psychological, medical, forensic, legal, cultural, social, economic, humanitarian, etc.), including documentation and investigation activities, involving survivors/victims, witnesses and other sources of information on crimes and human rights violations, particularly sexual and gender-based violence. It ensures that "the [individual concerned] maintains full control and power over her/his own experiences", life and body [3], and that her/his autonomy and right to self-determination are respected [4]. It limits the risks of retraumatisation, loss of trust and breach of confidentiality. Obtaining informed consent is an integral part of the universal “Do no Harm” principle.

Informed consent applies throughout the intervention, to any action undertaken with or on behalf of survivors/victims, witnesses and other sources, including conducting interviews; recording them in any form (written notes, video, audio); taking photographs or making copies; referring the person’s case to other services; or sharing information with any person or entity other than those carrying out the intervention [5].

Consent may be withdrawn at any time by the person concerned.

Obtaining this consent is part of a process that can be divided into several stages [6]:

  • Create a safe and trusting environment that ensures voluntary participation and genuine consent (see below for potential obstacles to informed consent);
  • Provide comprehensive, clear, understandable, objective and honest information, particularly about the intervention (objective, nature, stages) and the intervention team (including interpreters, where applicable); allowing sufficient time to ensure that all information is fully understood, including in the language best understood by the person concerned;
  • Explain the measures taken to ensure confidentiality (including storage procedures), as well as any existing limitations, and the potential benefits and risks of participating in the intervention;
  • Explain the individual’s rights regarding their participation (e.g. the right to refuse to answer questions, the right to ask questions, the right to stop at any time, the right to refuse referrals to certain services) [7];
  • Listen and respond to all concerns and questions raised by the individual concerned;
  • Explicitly [8] seek consent for all activities and procedures; and, in doing so,
  • Check whether there are any limitations on the individual’s consent (for example, consent to share testimony with a specific international institution but not with local institutions).

In some situations, for example in certain cases of documentation or investigations into sexual and gender-based violence, obtaining the victim’s informed consent is a legal obligation. Such consent may be compromised by the withholding of information (regardless of intent or malice), an insufficient understanding of the issues at stake (due to legal, physical or mental incapacity, or simply because of the complexity of the intervention or context), or the presence of any form of external coercion or the expectation/promise of benefit [9].


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Footnotes

[2UK Foreign & Commonwealth Office, International Protocol on the Documentation and Investigation of Sexual Violence in Conflict, Second edition ("PSVI Protocol"), March 2017, p. 90.

[3PSVI Protocol, op. cit., p. 90; GBV-Sub Cluster (Syria, Turkey Hub), Standard Operating Procedures for Gender-Based Violence Prevention and Response, 2018 ("SOP GBV Prevention and Response, 2018"), p. 35.

[4PSVI Protocol, op. cit., p. 89. Henk A.M.J. ten Have and M.S. Jean (UNESCO) (eds), The UNESCO Universal Declaration on Bioethics and Human Rights: Background, principles and application ("Commentary on UNESCO Declaration on Bioethics and Human Rights"), 2009, p. 126. ; United Nations Educational, Scientific and Cultural Organisation (UNESCO), Universal Declaration on Bioethics and Human Rights, 19 October 2005, Article 6. For further information on "informed consent" and its importance in the fields of medical ethics and bioethics, see UNESCO, Commentary on UNESCO Declaration on Bioethics and Human Rights, op. cit., pp. 124-127. See also the four steps identified by UNESCO for obtaining informed consent in such situations, pp. 131-132.

[5PSVI Protocol, op. cit., p. 90; World Health Organization (WHO), Ethical and safety recommendations for researching, documenting and monitoring sexual violence in emergencies ("WHO, Ethical and safety recommendations"), 2007, pp. 22-23.

[6For a more detailed analysis of the various stages of the process of obtaining informed consent, see SOP GBV Prevention and Response, 2018, op. cit., p. 35; PSVI Protocol, op. cit., p. 91; WHO, Ethical and safety recommendations, op. cit. pp. 22-23.

[7Gender-based Violence Information Management System (GBVIMS) Steering Committee, Interagency Gender-based Violence Case Management Guidelines: Providing care and case management services to gender-based violence survivors in humanitarian settings, First edition, 2017, p. 53.

[8If consent is required to be obtained using a specific form, several factors must be taken into account. See InterAction Protection Working Group, Data collection in humanitarian response: A guide for incorporating protection, 2003, pp. 3-4.

[9PSVI Protocol, op. cit., pp. 90; WHO, Ethical and safety recommendations, op. cit., pp. 22-23.