Questions can delve into sexual reproductive health and activity, income, family issues and other sensitive topics. Think to yourself, “Would I give this information to a stranger knocking at my door?”
Nowadays, project organisers can easily collect large amounts of data before, during and after a project. Because project staff can collect data digitally, they can tweak questionnaires up until the very start of a training session with data collectors. This applies to any type of project – developmental or humanitarian. Not only do organisations have data at their disposal, but they can also input and manipulate it over the lifetime of a project.
It’s a data collector’s dream!
However, step back for a moment. Behind all these numbers are actual human beings – with rights. Project organisers often ask very personal questions. Depending on the subject and scope of a project, these questions can delve into sexual reproductive health and activity, income, family issues, and other sensitive topics.
Think to yourself, “Would I give this information to a stranger knocking at my door?”. The numbers might tell a different story from this vantage point.
Informed Consent Beyond Data
Project data is not limited to the responses people give to questionnaires. Data also entails any photographs or videos staff take through the documentation process. Not only do staff use photographs for donor reports, but they also often use them for other purposes. For example, social media, marketing or advertising.
A quick search for the hashtag “#humanitarianaid” on Instagram will reveal thousands of images of projects in low-income countries. Funding institutions and NGOs post such images to demonstrate the work they are doing. Additionally, many individuals working on the projects also share images taken in the communities they are supporting.
We should ask some important questions here.
Have the people in these photos consented to have their photos shared around the world? Are they aware that these images are on personal social media profiles? Do they know these images may be online permanently?
This brings us to the topic of this blog post: “informed consent” in data collection for humanitarian and development programmes. What does this term mean? How does it play out in practice? And, importantly, how can we better ensure informed consent is present in development and humanitarian projects across the sectors?
Informed Consent Must Place the Stress on “Informed”
Often, project staff do not request consent to capture data or content. Organisations typically capture content that project organisers use at will. Alternatively, project staff may hand out questionnaires with an introductory statement. This statement may stipulate something along the lines of the following: “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 someone has consented to the organisation using their data? Does this count as informed consent?
Many project organisers believe a consent document is enough to ensure the presence of informed consent. Here at Arqaam, we do not believe this is enough.
Often, project organisers do not make much effort to ensure stakeholders and beneficiaries know exactly how the organisation will use their data or photographs. If an organisation undertakes a project in a town or region with no internet, and project staff ask an illiterate person “Can I use your image on social media?”, does that person’s “Yes” really count as informed consent? Do they understand what social media is and how the internet functions?
The answer is likely “no”. And even if the answer is “yes”, project staff should not assume that is the case.
Remember, stakeholders and beneficiaries are human beings. Development actors must treat them with respect and dignity. Poverty should not mean 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 explain to them what it is they are consenting to. The stress needs to be on the “informed” part of informed consent.
Informed Consent and Culture
With respect to photographs and videos – especially when photographing children – consider what consent means for the child. Of course, you must get the consent of the parents. However, do they understand that the organisation may use the child’s image on the cover of a publicly-available report? Do they understand the organisation may use their child’s photograph on highway billboards, advertisements, brochures, or any other promotional or documentation purposes?
Consider the most-recognised 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. The photographer, Steve McCurry, did not write down her name at the time. In an interview in 2002, Sharbat Gula said the photo was taken and published without her consent. As a Pashtun female, it is not appropriate for her to reveal her face to, or make eye contact with, a male who is not a member of her family. It is also not appropriate for a male, non-family-member to take a photograph of her.
“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 they could lose their soul if someone takes a photograph of them. In some Muslim countries, taking photographs of women in forbidden.
If your organisation is requesting consent to take and use photographs, thoroughly explain how you will use that content. You must also stick to the uses you communicate. You cannot request permission to use a photograph for one purpose and then go on to use it for other purposes. If you want to use an image for any purpose, you must explicitly detail all the uses and allow the subject to opt-out of any or all of those uses.
The Right to Be Informed Extends Beyond the Data Collection Side of a Project
Beneficiaries and stakeholders have a right to know how an organisation plans to use their data. After an organisation has obtained consent and collected data, they should discuss what they learned with those who provided the data. For example, project staff could say: “From your data, I understood that your main trouble is X, and that if we do Y, then your problem would be solved.” Organisations must keep stakeholders and beneficiaries informed about future plans, solutions and activities of the project.
Informed consent should be present throughout the entire project. It is not merely a concern when collecting initial data. Consequently, organisations must let stakeholders know how they are using their data, how it has affected project plans, and what the organisation plans to do. Beneficiaries should have a say in this process. This will ensure project organisers know if the solution they are proposing is appropriate. Consequently, stakeholders and beneficiaries may 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. This law came into effect in May 2018 and applies to all European Union countries. It is also relevant to businesses that have dealings with people who reside in those countries. For example, customers, newsletter subscribers and website visitors.
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.” This means 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 is relevant to data that development and humanitarian projects collect.
Everyone has the right to be forgotten – even if their region or country does not fall under the purview of the GDPR. As stated above, poverty should not mean people have fewer rights. Stakeholders and beneficiaries should have some agency over how their data is used, both during the project and after it is finished.
Everyone involved in development and humanitarian work – from project organisers and staff, to donors and volunteers – needs to actively ensure informed consent best practice. When it comes to respecting user data, passivity is not good enough. Consequently, 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.
To understand how we collect and store data, see our Data Collection and Cookies Policy page.