How to Handle Informed Consent in Longitudinal Studies When Participants Have a Limited Understanding of the Study
Gustafsson Stolt, U.
Journal of Medical Ethics 2005 November; 31(11): 670-673
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.
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Information and informed consent in a longitudinal screening involving children: a questionnaire survey Stolt, Ulrica Gustafsson; Helgesson, Gert; Liss, Per-Erik; Svensson, Tommy; Ludvigsson, Johnny (2005-03)
What Parents Find Important When Participating in Longitudinal Studies: Results From a Questionnaire Helgesson, Gert; Hansson, Mats G.; Ludvigsson, Johnny; Swartling, Ulrica (2010-03)
Helgesson, Gert (2005)This paper deals with ethical issues of particular relevance to longitudinal research involving children. First some general problems concerning information and lack of understanding are discussed. Thereafter focus is ...