The best interests of the child and the return of results in genetic research: international comparative perspectives

BMC Medical Ethics

Bartha Maria Knoppers¹  David Parry¹  Ma’n H Zawati¹ 

[1] Centre of Genomics and Policy, McGill University, 740 Dr. Penfield Avenue, Suite 5200, Montreal, Quebec H3A 0G1, Canada

关键词: Children’s rights;    Convention on the Rights of the Child;    Genomic research;    Paediatrics;    Best interests of the child;    Return of research results;   

Others  :  1090038
DOI  :  10.1186/1472-6939-15-72

 received in 2014-02-10, accepted in 2014-09-29,  发布年份 2014

【 摘 要 】

Background

Paediatric genomic research raises particularly challenging questions on whether and under what circumstances to return research results. In the paediatric context, decision-making is guided by the best interests of the child framework, as enshrined in the 1989 international Convention on the Rights of the Child. According to this Convention, rights and responsibilities are shared between children, parents, researchers, and the state. These "relational" obligations are further complicated in the context of genetic research.

Discussion

A comparative review of international, regional and national documents on the return of research results reveals that there is a dearth of normative documents in the paediatric context. The best interests of the child framework is increasingly complicated by a growing appreciation of pediatric autonomy and the development thereof; parental rights (particularly when parents are affected by the genomic information of their children); and the right not to know.

Summary

This comparative analysis reveals that policy-makers and legislators have responded to the above challenges in different ways. Nevertheless, in Europe as well as in Canada, there is an emerging trend towards making the return of certain results mandatory in the paediatric context, should this course of action prove to be in the best interests of the child.

【 授权许可】

   
2014 Zawati et al.; licensee BioMed Central Ltd.

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