Wednesday, March 28, 2018

Comparing trust-based and information-based consent

I remember watching people in the Democratic Republic of Congo consenting to biomedical research, a few years back. As the process of explaining the research study wore on, you often got the sense that prospective participants (by this time rolling their eyes) really just wanted to sign the form and get the whole consent thing over with. That attitude towards consenting -- not at all specific to resource-constrained settings -- can be explained in a variety of ways. People carry the burden of their own lives and might just be fatigued. Or they may just be more interested in whatever benefits or incentives the study might offer than what the study is about or involves. Yet another possibility is that those who are not really taking in the consent information are basing their decision to join the study on trust: trust in the researcher taking the consent and/or trust in the institution the researcher represents. Some social science studies of participant decision-making processes bear this out: people sometimes agree because they trust that the researchers will act responsibly.

The standard view is that decisions based primarily on trust do not constitute valid informed consent. Such consent is regarded as morally inferior to information-based consent, where prospective participants digest relevant information and make rational decisions in accordance with their own values. An interesting article in Bioethics challenges the standard view, arguing that trust-based consent is not inferior to information-based consent in the key ways that consent is morally supposed to matter: as an expression of autonomy and as a safeguard against coercion, manipulation and exploitation. Of course, consent based on trust is not protective against abuse if researchers or research institutions are not trustworthy, but (the authors argue) information-based consent is equally powerless in that regard.

Will this reasoned advocacy for trust-based consent have legs? Hard to say. There is a lot of confidence (trust?) in the more information-based approach to consent, perhaps because it makes us look more cognitive and rational, or because it can be associated with all sorts of procedures, and we are fond of procedures, even if we also know that people often don't understand much of what they consent to. In any case, the article is well worth a read.

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