Informed Consent

Informed consent is a general principle that is applied across most research that involves human participants. However, ICTD generates many challenges in practice.

Some issues

  • Informed consent procedures may involve the services of an interpreter if the researcher and participant do not speak the same language.
  • Many research participants will have little life experience through which they can interpret terms such as ‘research project’, ‘investigation’, or ‘publication’.
  • Written consent forms may be inappropriate for participants with limited literacy skills.
  • In some contexts, participants may be distrustful of signing written documents where they are not confident of the content or the identity and affiliations of the people inviting them to sign.
  • Participants will depend on their prior experiences (good or bad) of external projects (e.g. by NGOs or government agencies)  to interpret the offer (the potential risks and benefits) that is being made.
  • Open and iterative technology design, and participative research approaches, make it difficult to predict what risks (or benefits) might be associated with a project.
  • External actors may not understand local social dynamics so may not be able to identify some risks.
  • Dependencies on external funding may mean that benefits provided initially cannot subsequently be sustained, causing a potential harm, but project sponsors may not be clear about this at the start.
  • The high value that many participants attach to ICT skills, and narratives of technological transformation, may result in participants developing unrealistic expectations about what a project could deliver. ICTs could be a coercive inducement to participate in a project.
  • ICTs offer the possibility of collecting a very wide variety of data that many participants will be unaware of (e.g. call logs, GPS data, usage data), and probably do not understand how such data could be used.
  • Cultural norms and collective / individual decision making practices may constrain the autonomy of individuals in giving their consent. Participants may be reluctant to give consent unless it is clear that people in authority (within an organisation or within a community) have given their consent, on the other hand, individuals might feel compelled to take part in response to the decisions of other more powerful actors.

Some questions

  • Should a minimum ethical standard for ICTD require informed consent from participants, and how should evidence of informed consent be collected?
  • What should minimum ethical standards say about language, literacy and life experience barriers in informed consent?
  • How can risks and benefits be assessed and reviewed to maintain informed consent?
  • How should local power dynamics and decision making practices be addressed in procedures for informed consent?
  • Some initiatives may create ICT services that participants can access and then investigate the way that participants respond to those services, but those services might not be sustainted. How should  informed consent be applied in this type of context?
  • What (if anything) should minimum standards say about studies that depend on observing of actions that are made in the public domain, but in a different cultural setting?
  • What (if anything) should minimum standards say about the re-use of data initially collected automatically for other purposes (e.g. improving usability of a device)?
  • How can informed consent be managed as projects iterate through different interventions and different data gathering processes?

Some background material

Most of the sets of ethical guidelines on the resources page of this site discuss informed consent and many demand informed consent as a prerequisite for starting research.

Sterling & Rangaswamy (2010) discuss issues of informed consent in ICTD in detial.

Dearden (2013) discusses the relationship between informed consent and action research, as well as citing an example where issues of obtaining consent for research became deadlocked between a University Institutional Review Board and a school where the researchers hoped to conduct a study.

Your comments

Please consider the questions, or suggest other questions and join this discussion. You can provide comments here, or you can email Andy & Dorothea

 

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