Attitudes Towards Clinical Research in Acute Illness-A Population-Based Survey in Sweden

To investigate the attitudes of the Swedish population towards participation in research and preferences regarding legally authorized representative when a participant is unable to give informed consent.

A national survey conducted by a Swedish analysis and research company on a representative sample of the Swedish population on two occasions (2020 and 2023). The questions were based on the prerequisite that the respondents could not provide informed consent on their own. The questionnaire included two scenarios: one allowing time to consult a legal representative (non-emergency) and one where research had to start immediately, before consulting a legal representative (emergency).

In total, 2086 respondents were included in the analysis. A majority were positive to participate in both non-emergency (81% [1690/2086]) and emergency research (82% [1714/2086]) in situations where they would be unable to provide informed consent. Next of kin was preferred as a surrogate decision maker in 81% (1686/2086) of respondents and less than 1% (11/2086) preferred an unrelated legal representative such as an attorney.

This study shows that in a representative sample of the Swedish population there is a positive attitude towards research in the acute setting and in critical illness, even in situations when a potential participant cannot receive information and provide informed consent and that a next of kin is the preferred legally authorized representative.

This article reports results of a national survey from Sweden, where it shows that, among Swedish citizens, there appears to be broad acceptance of allowing family members to act as surrogate decision-makers in informed consent decisions for study participation among acutely critically ill patients who cannot perform consent themselves. At this point in time, Swedish law does not allow this.