Burke Wylie, Diekema Douglas S
Department of Medical History and Ethics, University of Washington, Seattle 98195-7120, USA.
J Pediatr. 2006 Jul;149(1 Suppl):S34-8. doi: 10.1016/j.jpeds.2006.04.049.
With new tools derived from the Human Genome Project, genetic research is expanding from the study of rare, single gene disorders to the evaluation of genetic contributors to common, complex diseases. Many genetic studies include pediatric participants. The ethical concerns related to pediatric participation in genetic research derive from the study designs commonly employed in gene discovery and from the power accorded to genetic prediction in our society. In both family-based studies and large studies combining genetic and other health-related data, special attention should be placed on recruitment procedures, informed consent, and confidentiality protections. If data repositories are created for long-term use, we recommend re-consent of pediatric participants when they reach adulthood. In addition, the potential for disclosure of individual results should be considered as part of the institutional review of genetic studies, taking into account the validity of research data and the potential that such data could be used in health care. The potential for genetic results to pose harms of personal and group stigma is also a consideration. Because genetic information is often accorded special power in our society, careful attention should be paid to how genetic information is collected and used in research involving pediatric participants.
借助人类基因组计划衍生出的新工具,基因研究正从对罕见单基因疾病的研究扩展到对常见复杂疾病的基因影响因素的评估。许多基因研究都纳入了儿童参与者。与儿童参与基因研究相关的伦理问题源于基因发现中常用的研究设计以及我们社会赋予基因预测的影响力。在基于家庭的研究以及结合基因数据和其他健康相关数据的大型研究中,都应特别关注招募程序、知情同意和保密保护措施。如果创建了供长期使用的数据储存库,我们建议在儿童参与者成年时重新征得他们的同意。此外,在对基因研究进行机构审查时,应将个人结果被披露的可能性作为审查内容的一部分,同时要考虑研究数据的有效性以及这些数据可能被用于医疗保健的可能性。基因结果可能造成个人和群体污名化伤害的可能性也是一个需要考虑的因素。由于基因信息在我们社会中常常被赋予特殊的影响力,在涉及儿童参与者的研究中,应谨慎关注基因信息的收集和使用方式。