Why Informed Consent Matters in International Cooperation

Data, Gender

“Questions can delve into people’s sexual reproductive health and activity, their income, family issues, and other sensitive topics. Hardly anyone thinks to themselves, “Would I give this info to a stranger knocking at my door?””

Nowadays, it’s easier than ever for project organisers to collect large amounts of data in advance, during, and at the end of a project. And because the collection can be done digitally, this means that organisers can tweak questionnaires up until the very start of a training session with data collectors. This applies for any type of project – developmental or humanitarian. It’s a data collector’s dream: being able to have all this information at your disposal and to be able to quickly input it and manipulate it over the lifetime of a project.

However, when you step back and think about the fact that behind all these numbers are actual human beings – with rights – these numbers tell a different story. Project organisers ask some very personal questions. Depending on the subject and scope of a project, these questions can delve into people’s sexual reproductive health and activity, their income, family issues, and other sensitive topics. Hardly anyone thinks to themselves, “Would I give this info to a stranger knocking at my door?”

 

Project data is not limited to the responses people give to questionnaires. Data also entails any photographs or videos that are taken as part of the documentation process for reporting to donors. Photos from projects are not only used as proof to donors of what’s been done. These photos and videos are also often widely used on social media.

 

A quick search for the hashtag “#humanitarianaid” on Instagram turns up thousands of images being shared of projects in low income countries. The photos are being posted not only by funding institutions and NGOs serving as project organisers to demonstrate the work they are doing. Many individuals working on the projects are also sharing images taken in the communities they are supporting. It leads one to ask, “Have the people in these photos consented to having their photos shared around the world in personal social media profiles, where the images will sit forever?”

 

This brings us to the important topic of “informed consent” in data collection for humanitarian and development programmes. What does this term mean, and how does it play out in actual practice during the course of a project?

 

Informed Consent Must Place the Stress on “Informed”

In the majority of cases, consent is not even requested. Photos are taken and used at will by project organisers. Alternatively, questionnaires are given out with an introductory statement, stipulating, “If you do not agree, you cannot participate in this project.” When it comes to responsible data collection, does this kind of coercion truly signify that someone has consented to having their data used; does it count as informed consent?

 

When target groups or individuals of humanitarian and development projects sign consent documents, many project organisers think this is suitable as informed consent. There is not a lot of effort made to ensure that people know what, exactly, will be done with their data or photographs.

When you are undertaking a project in a town or region where there is no internet, and you ask someone who is illiterate “Can I use your image on social media?”, does that person’s “Yes” really count as informed consent if they do not understand what social media is and how the internet functions?

 

“As a Pashtun female, it is not appropriate for her to reveal her face, make eye contact with, or be photographed by a male who is not a member of her family.”

Remember that these are human beings you are working with, and they should be treated with respect and dignity. Poverty should not mean that people have fewer rights. People benefiting from development or humanitarian projects have the right to understand what is being asked of them. Take the time to really explain to them what it is they are consenting to. The stress needs to be on the “informed” part of informed consent.

With respect to photographs and videos – especially when photographing children as part of fundraising or reporting – consider what consent means for the child. Of course, you must get the consent of the parents, but do they really understand that the child’s image may be used on the cover of an annual report that will be publicly available for download by anyone? Do they understand if an organisation or institution will use a child’s photograph for billboards alongside highways, advertisements, brochures, fundraising flyers, postcards, or any other promotional or documentation purposes?

 

Consider the case of the most recognized photograph in the history of National Geographic magazine – the image of Sharbat Gula, an adolescent Afghan girl living in a refugee camp. The photograph was on the cover of the June 1985 issue of the magazine. The photographer, Steve McCurry, did not even get her name at the time. In an interview in 2002, Sharbat Gula said the photo of her was taken and published without her consent. As a Pashtun female, it is not appropriate for her to reveal her face, make eye contact with, or be photographed by a male who is not a member of her family.

 

Different cultures have different attitudes toward photographs. In some cultures, people fear that their soul is lost when a photo is taken of them. In some Muslim countries, it is forbidden to take photographs of women.

 

In any instances where you are requesting consent for use of photographs, you should thoroughly explain how those photographs will be used – and you must stick to those uses. You cannot request permission to use a photograph as part of the written final report on a project, and then allow the photograph to be used in fundraising campaigns, on websites, or in social media posts. If you want to be able to use an image for any purposes, you must explicitly detail all the uses you want permission for, and allow the subject to opt-out of consenting to any or all of those uses.

 

The Right to Be Informed Extends Beyond the Data Collection Side of a Project

After you’ve gotten the consent of a group to use their data, they of course have the right to know how you plan to use that data. This means going back to them to talk to them about what you learned from the data. Tell them, “From your data, I understood that your main trouble is X, and that if we do Y, then your problem would be solved.” Keep them informed about the project plans, let them know your solution, and confirm with them that your assumptions are correct.

 

Informed consent carries through the entire project – let them know what is being done with the data, how it has affected the project plan, and what the agency plans to do. Beneficiaries should have a say in the process, so that project organisers know if the solution they are proposing sounds appropriate, or if the people of the region have other solutions.

 

Active Champions of Data Protection Needed

“Poverty should not mean that people have fewer rights”

The General Data Protection Regulation – commonly known as GDPR – lays out the most important ethical standards for responsible data collection. The law went into effect in May 2018 and applies to all European Union countries, as well as businesses that have any dealings with people who reside in those countries (customers, newsletter subscribers, website visitors, etc.).

Article 1 of the GDPR specifies that “This Regulation lays down rules relating to the protection of natural persons with regard to the processing of personal data and rules relating to the free movement of personal data.” The rules include a “right to be forgotten” or “the right to erasure.” Among other things, this means that a person has the right to have their personal data erased if the data “is no longer necessary for the purpose an organisation originally collected or processed it.” This directly speaks to the data that development and humanitarian projects collect.

 

Just because a particular country or region is not covered under the GDPR, doesn’t mean the people there don’t have the same right to be forgotten. As stated previously, poverty should not mean that people have fewer rights. Those benefitting from development or humanitarian projects should have some agency in how their data is being used, as well as what is done with that data when the project is finished.

 

Project organisers – and everyone from donors to volunteers – need to be less passive when it comes to respecting user data and following the true spirit of garnering informed consent from those who are part of any humanitarian or development project. The “do no harm” aspect of any humanitarian work must extend to protection of data – including videos and images – and requires active champions among project leaders.

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