Publication
Title
The storage and use of biological tissue samples from minors for research : a focus group study
Author
Abstract
Genetic research on pediatric stored tissue samples raises specific ethical questions that differ from those raised when adults are the donors. To investigate opinions on this matter, we conducted 10 focus group discussions. Five focus groups were conducted with adult participants and 5 had teenage participants between 15 and 19 years old. The discussions were analyzed with NVIVO 8 (qualitative research software). We found the following recurrent categories: the requirement that research should not pose any burden on children and that it should benefit other children, the trust people had in the role of parents, the need for information and the growth towards autonomy. Both the adults and teenagers we interviewed thought that the inclusion of tissue samples from minors in research had ethical implications. A major concern was that nontherapeutic research would pose no extra burden on children, which would assume the use of nonintrusive methods of gathering samples and the use of samples that were gathered in a diagnostic context. Participants, however, also understood the necessity of such research. The overall impression was that parents would be the best persons to make decisions on behalf of a small child and that the same parents would engage their children in the decision-making when they grew older. People thought that there was a duty to recontact minors when they reached the age of competence but on a best-effort basis.
Language
English
Source (journal)
Public Health Genomics
Publication
2011
ISSN
1662-4246
1662-8063
Volume/pages
14:2(2011), p. 68-76
ISI
000288110900002
Full text (Publishers DOI)
Full text (open access)
UAntwerpen
Faculty/Department
Publication type
Subject
Law 
External links
Web of Science
Record
Identification
Creation 12.10.2015
Last edited 09.05.2017