Return and Disclosure of Research Results: Parental Attitudes and Needs Over Time in Pediatric Oncology - 30/09/17

Doi : 10.1016/j.jpeds.2017.08.008

Imme Petersen, PhD ^1,^* , Peter Kaatsch, PhD ², Claudia Spix, PhD ², Regine Kollek, PhD ¹
¹ Hamburg University, Research Centre for Biotechnology, Society and the Environment, Research Group on Medicine and Neurosciences, Hamburg, Germany
² German Childhood Cancer Registry, Institute of Medical Biostatistics, Epidemiology and Informatics, Johannes Gutenberg University Mainz, Mainz, Germany

^*Reprint requests: Imme Petersen, PhD, Hamburg University, Research Centre for Biotechnology, Society and the Environment, Research Group on Medicine and Neurosciences, Lottestrasse 55, D-22529 Hamburg, Germany.Hamburg UniversityResearch Centre for Biotechnology, Society and the EnvironmentResearch Group on Medicine and NeurosciencesLottestrasse 55HamburgD-22529Germany

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Abstract

Objectives

To explore parental attitudes regarding the return and disclosure of research findings in pediatric cancer trials over time.

Study design

Two surveys were set up to evaluate the stability of parental attitudes. One survey was carried out among 581 parents whose child was diagnosed recently (response rate, 53.5%). A second, population-based survey was set up with a time interval of 4 years between first cancer diagnosis and survey in which 1465 parents were included (response rate, 55.1%).

Results

Almost all surveyed parents stated a parental right to receive aggregate research results. Fifty-five percent of the parents who recently participated in trials and 62% of those asked after a multiyear time interval thought that disclosure of individual findings is in any case necessary (P = .0034). The respondents wanted to restrict the duty to disclose study results to the child according to their notion of the child's well-being, composed of child's maturity, impairment of the parent–child relationship, and the quality of the results.

Conclusions

Attitudes of parents regarding the return of research findings change over time. Shortly after diagnosis, parents are mainly interested in aggregate findings. Interest in individual findings appeared to increase as more time elapsed between cancer diagnosis and survey.

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Keywords : ethics, parents, minors, participants, study findings, cancer

Abbreviation** : GCCR

Plan

Supported by the European Union's 6^th Framework Program (FP6-IST-026996) within the context of the research project “Advancing clinico-genomic trials on cancer: Integrated services improving medical knowledge discovery.” The authors declare no conflicts of interest.