ELSI Concerning Underage Subjects in Whole-Genome Sequencing Studies

2017 Fiscal Year Final Research Report

• Project/Area Number: 15K08550
• Research Category: Grant-in-Aid for Scientific Research (C)
• Allocation Type: Multi-year Fund
• Section: 一般
• Research Field: Medical sociology
• Research Institution: Osaka University
• Principal Investigator: OHASHI Noriko 大阪大学, 医学系研究科, 特任研究員(常勤) (50739430)
• Project Period (FY): 2015-04-01 – 2018-03-31
• Keywords: バイオエシックス / ゲノム・遺伝子解析 / 遺伝情報 / 未成年者

Outline of Final Research Achievements

Genomic and genetic analysis studies are rapidly spreading due to the drastic improvement of genome analysis technology. In order to participate in these studies, the consent of the subject is required. Using underage subjects who lack the ability to consent raises some issues, such as informed consent by proxy and informed assent, as well as other issues that concern the specific nature of genetic information. In case of comprehensive genome analysis studies, e.g. whole-genome sequencing studies, problems unique to them also arise. In this study, I examine ELSI concerning underage subjects in comprehensive genome analysis studies, and consider how best to develop regulations and systems for this kind of research. The findings have been presented at several academic conferences as well as in print.

Free Research Field

生命倫理学