Get Published | Subscribe | About | Write for Our Blog    

AJOB Primary Research.

Lay attitudes toward trust, uncertainty, and the return of pediatric research results in biobanking

Background: Trust plays a role in participants’ reactions to clinical residual biobanks. The purpose of this study is to assess whether trust in medical researchers and negative reactions to uncertainty influence the attitudes of parents of pediatric research participants toward the return of genomic research results from biobanking. Methods: Focus groups were conducted in collaboration with two community-based organizations. Participants completed a demographic questionnaire and the trust in research and intolerance of uncertainty scales. The focus groups were then conducted according to a thematic focus-group guide; discussions were transcribed and analyzed by two trained coders. Results: Emerging themes included the importance of returning research results to both children and parents, sharing results with few limitations based on a child’s age, and the desire for results even when researchers had concerns about analytic validity. Negative reactions to uncertainty appear to have influenced only one theme: the paradoxical claim by participants with stronger reactions to uncertainty that they had a “right to information.” Conclusion: Participants prefer to receive most or all of the results produced by genomic research, and they want their children, within variable age restrictions, to have access to that information as well.

View Full Text

Bookmark the permalink.

Comments are closed.

Volume 7, Issue 3
July 2016

Target Articles.

Improving third-year medical students' competency in clinical moral reasoning: Two interventions Paul J. Cummins, Katherine J. Mendis, Robert Fallar, Amanda Favia, Lily Frank, Carolyn Plunkett, Nada Gligorov & Rosamond Rhodes
Religious identity and workplace discrimination: A national survey of American Muslim physicians Aasim I. Padela, Huda Adam, Maha Ahmad, Zahra Hosseinian & Farr Curlin
A pilot study of neonatologists' decision-making roles in delivery room resuscitation counseling for periviable births Brownsyne Tucker Edmonds, Fatima McKenzie, Janet E. Panoch, Douglas B. White & Amber E. Barnato
Does promoting research advance planning in a general elderly population enhance completion of a research directive and proxies' predictive ability? a randomized controlled trial Gina Bravo, Lise Trottier, Marie-France Dubois, Marcel Arcand, Danièle Blanchette, Anne-Marie Boire-Lavigne, Maryse Guay, Paule Hottin, Julie Lane, Suzanne Bellemare & Karen Painter
Concerns about genetic testing for schizophrenia among young adults at clinical high risk for psychosis Ryan E. Lawrence, Phoebe Friesen, Gary Brucato, Ragy R. Girgis & Lisa Dixon