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Informed consent and confidentiality

Last edited: January 03, 2012

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The voices of women and girls who have experienced violence in their lives can be a powerful force for campaigning that should not be ignored or belittled. Hearing directly from those who have endured violence, fought against it, or helped to prevent it happening to others adds credibility, and helps put ‘a human face’ on facts and statistics that can provoke the public to take action.

In considering this as an element in campaigning however, it is critical to account for the potential risks involved. Safety concerns should be paramount. For example, revealing the names or whereabouts of survivors, in news articles, websites or videos, can lead to retaliation by perpetrators, and often escalate violence not only against survivors themselves, but also against their families and others who may be helping them. 

Specific cases of violence against women and girls must therefore not be exposed to the public unless the survivors are fully informed of potential consequences, and have given their explicit, possibly written, consent. In addition, it is imperative that any information on any individual cases of violence against women and girls is treated with strict confidentiality, e.g. when publishing research results or campaign materials. A possible exception is “naming and shaming”, i.e. publicizing information on proven violations perpetrated by well-known personalities, as a deliberate campaign tactic. In this case, it is just as crucial to consult with the survivors affected by the case and obtain their full consent, and to present the issue in a way that protects the survivors’ dignity and privacy.

Example: The Family Violence Prevention Fund (now Futures without Violence) maintained a “Hall of Fame” and a “Hall of Shame” for celebrities and other prominent public figures who either championed and upheld gender equitable norms or exhibited gender inequitable and abusive behaviour.

Note that even if survivors have given their informed consent to have their experience publicized, it is important to continually assess risks and prioritize safety, e.g. by using pseudonyms, blurring faces (TV, video) and changing any information that may be used to identify the survivors. Photographs of survivors should not be used without their informed consent, and they should be fully aware of the potential use and dissemination of the publications which carry their photographs or other information. It is important to remember that even if informed consent is given, those involved in a campaign may not be fully aware of the potential safety risks involved—these should be fully explained, and at any point, it must be left to the individual campaigner to decide whether she wishes to disclose her own experience to others, within the campaign alliance or beyond.

The four principles of informed consent presented below are designed for interview and research purposes. However, they can also be applied to campaign activities that may put participants at risk, such as public events, or media-related activities.

–        Disclosure: The use and the purpose of the information sought from VAW survivors and other individuals who participate in research (the “subjects”) must be fully explained, so as to protect the subject’s safety and to maintain an honest relationship between the researcher and the subject.

–        Voluntariness: The subject must give explicit, preferably written, permission for her information to be used, and express whether she is willing to be identified by name. She must be in a condition to give this consent voluntarily.

–        Comprehension: The subject must understand the implications of her providing information. This may be complicated if she does not have a full understanding of the intended distribution (e.g. via the internet). The interviewer must protect the subject’s safety without being condescending.

–        Competence: The subject must be able to understand the implications of her participation. This is especially important for survivors of VAW, who have suffered significant trauma and who may be psychologically unprepared to deny consent.  (Adapted from Witness)

In campaigning on VAW, a further decisive aspect is empowerment: since VAW can be a deeply disempowering experience, it is important survivors take the opportunity to speak out – but only if they wish to do so, and if they are adequately prepared for the experience (e.g. by rehearsing the speech as a group and planning for risks).