How Informed is Informed Consent?

All of us who document and research are familiar with the notion of informed consent. Together with confidentiality and Do No Harm, it forms this trifecta of inviolable principles to guide our practice.  But I am not sure if those who agree always fully understand the implications of that ‘yes’. More importantly, I don’t know if that ‘yes’ comes from a sense of agency and choice.

Very often, we seek responses from people who have been a part of our projects as direct recipients of services or inputs in some form. I detest the term beneficiaries. But if, at some level, we have placed them in that category (or also allowed them to think like that), then they may feel obligated to participate. The ‘yes’ may then actually mean – ‘Sure. I will tell you what you want because I want to continue to be a part of this.’ Have we ever said to someone – You can choose not to be a part of this process at all. This will not have any impact on how we engage with you and your subsequent access to the project/programme?

Also, our dialogue with participants can be intrusive.  They may have consented in the beginning. But they probably did not know that the conversation would get into the realm of the deeply personal. Having said yes initially, they may feel unsure about backing out in between.

 Sometimes, people also say things as part of a conversation. Buried feelings and emotions may surface. They may remark about certain people or structures/systems in ways that they would not otherwise. Even if they have given consent, they may not fully realise the implications of having those words written and ascribed to them. Moreover, do we share that this conversation will shape a narrative that may be go beyond the immediate purpose and be recycled across outputs and channels?  

It is, undoubtedly, a great privilege to be welcomed into someone’s house and be given that time. In fact, I am often overwhelmed by the hospitality and the openness with which people share. It is, then, my responsibility to capture what is spoken, and left unspoken, in a manner that is dignified  and authentic as far as possible. It is also my responsibility to unpack this notion of informed consent, to check back with them even at the cost of losing out on those quotable quotes.

Besides, sometimes, knowing is enough. Everything does not need to be written explicitly for (donor and public) consumption.

We have to get better at this. I am definitely going to try.

2 responses to “How Informed is Informed Consent?

  1. Thank you for going the extra mile to ensure that you are protecting the privacy of those who speak with you and that they are “informed” of the consequences of what they share!

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