Pediatric research 'personalized'? International perspectives on the return of results

被引:0
作者
Knoppers, Bartha Maria [1 ]
Rioux, Amelie [1 ]
Zawati, Ma'n H. [1 ]
机构
[1] McGill Univ, Genome Quebec Innovat Ctr, Ctr Genom & Policy, Montreal, PQ, Canada
关键词
consent; disclosure; genetic tests; incidental findings; minors; pediatric research; return of results; whole-genome sequencing;
D O I
10.2217/PME.12.110
中图分类号
R9 [药学];
学科分类号
1007 ;
摘要
Decision-making dynamics in pediatric research have their foundation in the principle of the 'best interests of the child'. The introduction of new sequencing technologies and the concomitant debate surrounding the return of research results and incidental findings are, however, challenging the interpretation of this principle. A comparative ana-lysis of international and national approaches to the issue (USA, Canada, France, Spain and the UK) reveals not only the emergence of context-specific pediatric policy in this regard, but one that is 'personalized' to the child - that is, what is clinically significant and actionable during childhood.
引用
收藏
页码:89 / 95
页数:7
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