Article Text

Download PDFPDF
How to handle informed consent in longitudinal studies when participants have a limited understanding of the study
  1. G Helgesson1,
  2. J Ludvigsson2,
  3. U Gustafsson Stolt3
  1. 1The Centre for Bioethics at Karolinska Institutet and Uppsala University, Sweden
  2. 2The Division of Paediatrics at the Department of Molecular and Clinical Medicine, Linköping University, Sweden
  3. 3The Division of Paediatrics at the Department of Molecular and Clinical Medicine, Linköping University, Sweden
  1. Correspondence to:
 Gert Helgesson
 PhD in philosophy, Researcher at the Centre for Bioethics at Karolinska Institutet and Uppsala University, Sweden; Gert.Helgessonbioethics.uu.se

Abstract

Empirical findings from a Swedish longitudinal screening study show that many of the research subjects had a limited understanding of the study. Nevertheless they were satisfied with the understanding they had and found it sufficient for informed continued participation. Were they wrong? In this paper, it is argued that the kind of understanding that is morally required depends partly on the kind of understanding on which the research subjects want to base their decisions, and partly on what kind of knowledge they lack. Researchers must ensure that the information process is not flawed and that participants receive the information they want. To achieve this, new information efforts may be needed. Researchers must also ensure that research subjects have knowledge about aspects of importance to them. Lack of understanding may, however, be the result of conscious choices by research subjects to disregard some of the information because it is not important to them. Such choices should normally be respected.

  • information
  • consent
  • longitudinal studies
  • screening
  • understanding

Statistics from Altmetric.com

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

Footnotes

  • i Their list contains a seventh point: “recommendation (of a plan)”, which mainly concerns doctor/patient relations where a certain treatment is recommended in a healthcare situation.