4 Principles & 5 Methods to consider regarding ‘Informed Consent’

by | May 18, 2019 | ICT4D, Ideas |

In the world of humanitarian data management, informed and meaningful consent is a challenging conversation, which I have written about before. Most people know that it is extremely difficult if not impossible to achieve for various reasons. When thinking about how we can improve our practices around gathering consent, we need to consider both content and methodology.

Content refers to what we communication and discuss, which will have some variation based on the context, but at minimum should include: what data we are collecting, why are we collecting it, what do we use it for, who we share it with, how those we share it with use it, what the rights are of the individual are, how they can access it, delete it, etc. It is also important to talk about why their data is valuable to them and to us; what opportunities it provides to them.

From a legal perspective, we need some sort of acknowledgement from the individual that they are giving their free and informed consent to us collecting the data. This is usually captured on a document in the form of signature or box tick beside one or a few statements about consent.

However, there are many different creative ways to communicate with people about data so the signature or box tick has at additional meaning, even if it isn’t fully informed. First, four principles we should always consider in communicating about consent:

  1. Assume there are pockets of people with whom you are working who are either linguistic (read/write) literate or digital illiterate.
  2. Communicate before collecting the signature or box tick, not at the point of data collection.
  3. Where possible, do as much of the communication face-to-face complemented with ‘visuals’. Consent should be viewed as discussion not a one-way communication.
  4. Have an easily identifiable group of people, of diverse gender and age, who are in a physical place (a desk/office) or are roaming around, who individuals can approach with questions about consent.

Here are five options of how to communicate and discuss consent with the people you are working with:

  1. Use banners and pamphlets with text and images to describe everything you are collecting, sharing, using, etc. Ideally these should be circulating in the days before the data collection will occur and should be done using a method that creates space for discussion.
  2. Use small group discussions where a facilitator talks about data – its value, what is collected, shared, why, etc. – and creates the space for questions and discussions.
  3. Use gender specific group discussions. Similar to option 2 above, but in some contexts it is much more effective to separate genders.
  4. Use a local theatre troupe to create a fun, interactive, and memorable method of talking about data.
  5. Record the voice of a locally respected leader discussing the data rights of the individuals which is played for each person or a small group before they give consent.

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