Article by our Digital Learning and Youth Leadership Program Lead, Hamza Arsbi
Social Media has been under increasing scrutiny due to its data collection and sometimes ill use of personal information. Striking a balance between Data-Informed Decision Making and Personal Privacy is a balance required not only from social media outlets but also from development organizations, activists, and others working with vulnerable communities and at-risk individuals. It is a responsibility that must be approached with the utmost care.
Development organizations no matter how large or small are subject to cyberattacks that could put people’s lives and livelihoods at risk. In 2019, hackers breached UN Servers through a vulnerability in the system and downloaded data related to UN human rights missions, personal information, internal documents, and more. The UN admitted that this was a shocking incident that triggered a rebuild of multiple systems, even though there were reports that the system vulnerabilities were reported years before the attack. This incident showcases the dangers of not understanding or not paying attention to the risks posed by insufficient cybersecurity systems and data management strategies.
A Responsible Data Strategy Starts with Informed Consent
Informed Consent can be defined as a process of informing participants of the reasons for the data being collected, providing a clear understanding of what will be gathered and the associated risks so participants can make an informed decision regarding their personal data.
Pedroni and Pimple (2001) broke down the concept into four components:
1- Information: Participants must be provided with all information regarding the purpose, risks, and usage of data collected.
2- Understanding: Informed consent is not only about providing information, but also ensuring that participants understand that information.
3- Volunteering: is a vital component of Responsible Data Collection as it affirms that participants are not coerced or pressured into sharing information, this also includes payment for data, in some cases food parcels were used as an incentive, which is morally dubious at best.
4- Decision-making capacity: this is especially important when working with children or other vulnerable groups. Responsible Data Collection dictates the importance of ensuring that an adult or someone with the ability to make a sound judgment is present.
Best Practices for Informed Consent
Christine Garcia at Atlan discussed the following best practices when setting up informed consent:
Make it short: It’s helpful to keep your script or text to something people can go through in just a minute or two. Especially when working with vulnerable groups who might have low literacy rates, it is important to ensure they can go through the entire process quickly and clearly.
Keep it simple: Any information should be given in simple, non-technical terms so anyone can easily understand it. Keeping in mind the intended audience.
Break up text: Don’t be afraid to deviate from standard paragraphs. Bullets, lists, tables, pictures, and charts are often easier to understand than lots of written text.
Finally, she advises that a good design would Use “you”: Write the introduction in the second person (e.g. “You’ll be asked to rate 10 questions on a 1-5 scale”) to make it clearer for the listener. The only time you should deviate from the second person is the actual “informed consent” recording, which should use the first person (e.g. “I voluntarily agree to participate in this survey”).
Building a Responsible Data Collection and Management Strategy is a rewarding experience that takes dedication and close attention to detail. Understanding the responsibility development organizations and activists have to their partners and stakeholders can advance development work and ensure the security and privacy of everyone involved.