Original articleInformed consent for enrolling minors in genetic susceptibility research: a qualitative study of at-risk children’s and parents’ views about children’s role in decision-making☆
Section snippets
Methods
We chose a qualitative approach for this study for several reasons. An open-ended format allowed us to: (a) explore the full range of perceptions and beliefs regarding the involvement of minors in genetic susceptibility research, (b) observe the evolution of individuals’ perceptions in the context of an interactive exchange, and (c) elicit detailed descriptions of family dynamics and decision-making patterns. In developing a methodology that best addressed our specific set of research
Results
Thirty-seven dyads of parents and children participated in the initial interviews. For the follow-up interviews, 20 families participated. Two families declined participation in the follow-up interview and 15 families did not respond or were lost to follow-up. Table 2 provides the distribution of our sample by type of disease, age of child, and race. As shown, we were unable to recruit a sufficient number of African-American families to determine whether there were any racial differences in
Discussion
The families that participated in our study were highly variable in the degree to which children would be involved in decision-making about research participation. Most families used criteria such as developmental stage of the child and degree of risk of the research to determine the respective roles that each would play in decision-making. In general, the older/more mature the child, and the less risky the research, the more likely decisions would be made jointly.
Although we did not involve
Acknowledgements
We are indebted to the parents and children who participated in this study. We are also grateful to our colleagues, at both University of Virginia (e.g., Susan Meisfeldt) and Johns Hopkins (e.g., Lillie Shockney, Roger Blumenthal, M.D.), who assisted us in recruiting these families. We also appreciate the help of our interviewers, Jessica Rispoli and Dana Wollins, and our Research Assistant, Jennifer Langer. Neil A. Holtzman, M.D., M.P.H. and Peter O. Kwiterovich, M.D. were co-investigators on
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This work was supported by a grant (R01 HD36189-01) from the National Institute of Child Health and Development (NICHD), and an Administrative Supplement from the National Human Genome Research Institute (NHGRI).
The full text of this article is available via JAH online at http://www.elsevier.com/locate/jahonline.