Ethical Research Involving Children

The disclosure of incidental genomic findings: An “ethically important moment” in pediatric research and practice.

Driessnack, M., Daack-Hirsch, S., Downing, N., Hanish, A., Shah, L., Alasagheirin, M., Simon, C.M., Williams, J.K. (2013). The disclosure of incidental genomic findings: An “ethically important moment” in pediatric research and practice. Journal of Community Genetics, 4(4), pp. 435-444.

Abstract: Although there are numerous position papers on the issues and challenges surrounding disclosure of incidental genomic findings involving children, there is very little research. To fill this gap, the purpose of this study was to explore the perspectives of multiple professional (N = 103) and public (N = 63) stakeholders using both interviews and focus groups. Using qualitative analysis, we identified one overarching theme, “It’s hard for us; it’s hard for them,” and three subthemes/questions: “What to disclose?,” “Who gets the information?,” and “What happens later?” Perspectives differed between professional (Institutional Review Board chairs, clinicians, and researchers) and public stakeholders. While professionals focused on the complexities of what to disclose, the lay public stated that parents should have all information laid out for them. Professionals pondered mul- tiple parent and child situations, while the public identified parents as informational gatekeepers who know their chil- dren best. Professionals described the potential requirement for follow-up over time as a logistical “nightmare,” while the public believed that parents have the responsibility for managing their children’s health information over time.
However, the parent role as gatekeeper was seen as time limited and in need of professional support and backup. Our findings present a case for needed dialogue around what we propose as an “ethically important moment,” with the goal of protecting and respecting the viewpoints of all stake- holders when policies regarding children are developed. (Reproduced with permission. © Springer-Verlag Berlin Heidelberg 2013.)

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