Informed, autonomous and safe: a qualitative study describing the views of English adolescents on consent to participate in medical research.

Source: PubMed, NCBI / U.S. National Library of Medicine

There is confusion in practice regarding the role of adolescents in consenting to their participation in medical research. There are lack of studies investigating the views of adolescents on the process of consenting to participate in research and what this should look like. This study provides a qualitative account of adolescents' views on this process. Qualitative interviews or written responses were collected from 25 adolescents (aged 14-17 years). Views were explored using a story completion method, where participants were given a stem scenario and asked to state what they thought should happen next. Thematic analysis was undertaken to identify key codes and themes. Our participants saw parents as an important source of information and often valued their advice. They wanted to make autonomous, informed decisions and thought their parents would contribute to the process of becoming informed. They assessed the risk of participation based on trust of familiar institutions and processes. English law sees adolescent medical consent in terms of competence but is not clear about research consent. We may be doing a disservice to adolescents by not providing support to help adolescents attain competence prior to decision-making. This could be provided by a parent or another trusted adult. Our participants valued input from their parents and want to be supported in making decisions regarding participation in medical research.