Creating and Informed Script

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Exercise

Evaluating Informed Consent Language

Consider these two examples of language from informed consent scripts, identify problems, and suggest improvements.

  1. Three people will have direct access to these observations: me, and the two other members of the research team. The written observations will be kept during the analysis of the data, that is, about 3 years. After that, they will be destroyed.
  2. We will anonymize all data before sharing it in a trusted digital repository. No one will be able to identify you from that data.
  • show solution
    1. The two biggest issues here are the specification of a restricted group of people with access to the data and the eventual destruction of the data. We would suggest something like this instead: “Three people will have direct access to the full observations: me, and the two other members of the research team. We will remove all information that can identify you from these observations before sharing them with other researchers.”
      1. As explained above, do not promise that no one will be able to identify participants. Moreover, avoid complex technical terms such as “anonymize” and “trusted digital repository. Instead, something like this may work: “We will remove information that can identify you, such as your name and exact date of birth, from the data. Then we will make the data available to other researchers, so that your answers can help scientists better understand why …”