Comparative Perspectives on the Law & Ethics on the Expanded Newborn Screening: Japan & U.S.
| Project/Area Number |
15K03248
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| Research Category |
Grant-in-Aid for Scientific Research (C)
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| Allocation Type | Multi-year Fund |
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| Section | 一般 |
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| Research Field |
New fields of law
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| Research Institution | Sophia University |
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Principal Investigator |
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| Project Period (FY) |
2015-04-01 – 2019-03-31
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| Project Status |
Completed (Fiscal Year 2018)
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| Budget Amount *help |
¥4,550,000 (Direct Cost: ¥3,500,000、Indirect Cost: ¥1,050,000)
Fiscal Year 2018: ¥1,040,000 (Direct Cost: ¥800,000、Indirect Cost: ¥240,000)
Fiscal Year 2017: ¥780,000 (Direct Cost: ¥600,000、Indirect Cost: ¥180,000)
Fiscal Year 2016: ¥1,820,000 (Direct Cost: ¥1,400,000、Indirect Cost: ¥420,000)
Fiscal Year 2015: ¥910,000 (Direct Cost: ¥700,000、Indirect Cost: ¥210,000)
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| Keywords | 医事法 / 新生児スクリーニング / 公衆衛生 / プライバシー / 研究倫理 |
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| Outline of Final Research Achievements |
This research project has looked at the legal and ethical issues of newborn screening ("NBS”) programs mainly in Japan and the U.S. The NBS is the pre-symptomatic screening of genetic disorders in order to save babies life and to prevent their disabilities by early detection and by early treatment.
Recently, the number of disorders for screening are large expanded in both countries (e.g., over 50 panels) and other developed countries. One says that these expansions are largely technologically driven since the invention of new device (Tandem Mass Spectrometry) has a great impact its expansions. There are several important unanswered issues in NBS programs such as (1) the proper role of parental consent, (2) whether children should be subject to screenings even without any effective treatment, and (3) privacy concern for secondary uses of residual blood samples. So, it has explored ethical and legal challenges surrounding expanded NBS programs, and its proper regulatory frameworks.
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| Academic Significance and Societal Importance of the Research Achievements |
拡大「NBS」の問題群の分析は，医療の発展のための遺伝学的情報の利活用とプライバシーの尊重との相克，真の患者の視点とは何か，などという医療と法のあり方そのものにかかわる，広がりのあるテーマである．文献調査と国内外の専門家へのインタビューなどを織り交ぜて検討を行い，日本での政策変更に伴い近い将来直面しうる課題と弊害を洗い出し，解決策，弊害を洗い出し，解決策の提言をも目指した．単なる海外の制度や実態の紹介を超え，近年日本でも拡大された「NBS」という現実の政策における課題の掘り起こしを含め政策提言を行うことを目指した点が，本研究の意義である．分析結果について，引き続き公表作業に取り組む．
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Report
(5 results)
Research Products
(8 results)
