Cambridge dictionary defines it as
“agreement or permission to do something from someone who has been given full information about the possible effects or results”
Great, you say. That’s simple, I’ll just tell the patient that I’ll take their photo and their story will be shared on the internet. They signed my form. Informed consent: Tick!
I would argue that this definition isn’t adequate, especially in the contexts where NGOs work.
Your beneficiary often desperately needs the services your NGO is providing. If you are wearing the same logo as the people that are providing the service they need, they may be reluctant to refuse permission in case it means they no longer receive assistance. You should make it very clear to them that refusing permission for their image/story to be shared will have no impact on the care or assistance they receive, and they have every right to say no.
Think back to a time when you were emotionally distressed – maybe your loved one was rushed to hospital, or you were just in a car accident. If someone came up to you in that moment and started taking your photo and asking you questions, do you think you would be in a state of mind to make a decision about whether you want your story shared with the world? Probably not. I’m not saying that they won’t want their story shared, just that they might need time to consider their consent. They should also be given the means to revoke their consent if they later change their mind.
In some remote contexts where NGOs work, the only citizens with access to the internet are NGOs and governments. So when you tell your beneficiary that their image and story will be published on the internet and shared on social media, are you sure that they know what you are talking about?
In many countries only adults have the legal ability to give consent. If you suspect your beneficiary may be a minor, you will need to get the consent of their parent or legal guardian.
The potential repercussions
It’s quite possible that sharing a beneficiary’s story with the public could put them in mortal danger, legal jeopardy, or stigmatise them in their community. Consider the repercussions for LGBTQI beneficiaries if you ‘out’ them in a country where homosexuality is punishable by death. Think about the stigma a HIV positive patient would suffer if their local community found out their status. What might happen to an ‘illegal migrant’ that sought refuge in a country that doesn’t recognise the rights of refugees?
It’s your duty to inform your beneficiary of these possibilities and let them decide if their story should be told.
The right to anonymity
Your beneficiary might want their story told, but they also might want to protect their identity. You should make every effort to accommodate their wishes by offering to blur their face, disguise their voice, give them a pseudonym, change some details of their background, etc.
There’s no such thing as iron-clad informed consent, unless your beneficiary is a barrister and has sought independent legal advice (unlikely!).
You need to do everything reasonably within your power to inform your beneficiary of their rights, and what the repercussions are. If you have doubts over their capacity to give informed consent, then you must not publish their story.
The needs of an organisation to share stories for fundraising, communications and recruitment cannot take priority over the rights of their beneficiaries. It’s about respecting the person you are there to help.
If you want to collaborate with an expert in this field, contact Sean Brokenshire below to talk about your organisation's needs.