Avard D, Silverstein T, Sillon G, Joly Y
Law Faculty, Centre de Recherche en Droit Public, Université de Montréal, Montréal, Qué, Canada.
Public Health Genomics. 2009;12(3):191-201. doi: 10.1159/000189633. Epub 2009 Feb 10.
This paper presents the results of an exploratory qualitative study that assesses Canadian pediatric researchers' perceptions of a pre-selected group of ethical issues raised by pharmacogenomics research with children.
As a pilot study, we conducted semi-structured telephone interviews with Canadian pediatric pharmacogenomic researchers. The interviews were guided by the following themes: (1) benefits and risks of inclusion, (2) the consent/assent process, and (3) the return of research results.
Issues about assent, consent, risks and benefits, as well as the communication of results were addressed by the respondents. Some issues, such as the unique vulnerability of children, the long term privacy concerns associated with biobanking, additional core elements that need to be discussed and included in the consent/assent forms, as well as the challenges of communicating research results in a pediatric research were not explicitly identified by the respondents.
Further consideration should be given to address the ethical challenges of including children in pharmacogenomics research. This exploratory study indicates that further guidance is needed if children are to be protected and yet benefit from such research.
本文介绍了一项探索性定性研究的结果，该研究评估了加拿大儿科研究人员对儿童药物基因组学研究引发的一组预先选定的伦理问题的看法。
作为一项试点研究，我们对加拿大儿科药物基因组学研究人员进行了半结构化电话访谈。访谈围绕以下主题展开：（1）纳入研究的益处和风险，（2）同意/赞成过程，以及（3）研究结果的反馈。
受访者讨论了有关赞成、同意、风险和益处以及结果沟通等问题。一些问题，如儿童的独特脆弱性、与生物样本库相关的长期隐私问题、需要在同意/赞成表格中讨论并纳入的其他核心要素，以及在儿科研究中沟通研究结果的挑战，受访者并未明确指出。
应进一步考虑解决将儿童纳入药物基因组学研究的伦理挑战。这项探索性研究表明，如果要保护儿童并使其从这类研究中受益，还需要进一步的指导。
