| 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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| 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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