| Budget Amount *help |
¥3,400,000 (Direct Cost: ¥3,400,000)
Fiscal Year 2000: ¥700,000 (Direct Cost: ¥700,000)
Fiscal Year 1999: ¥2,700,000 (Direct Cost: ¥2,700,000)
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| Research Abstract |
The Human Genome Project ("HUGO") is discovering the exciting facts on the area of basic science, but it does not provide service or intervention with genetic disorders. Genetic services are not yet integrated into mainstream medicine; knowledge of genetics is not yet viewed as a relevant component of medical practice, nor of education, nursing, social work, or other disciplines that will deal with individuals who have genetic conditions. Moreover, general Japanese at least over middle-age have a lack of basic knowledge about genetics.
Consequently, the genetic explanation of doctors to the parent having infants with genetic disorder is sometimes difficult to understand for the parents or non-professional person due to the medical or technical terms.
Therefore, we attempted to provide the latest accurate information useful for genetic counseling. Genetic counseling to the parents of the infants with Down Syndrome (DS) is considered as a representative model for other genetic disorders because of the high incidence of DS. To support the people with DS and the families, we organized the professionals of the various fields and parents and successively constructed the database system concerning with DS in 1997.
In this research, we extended the above database in order to support the people with other genetic disorders and the family. The system was designed to provide appropriate information about the syndrome, including issues on health/medical care, parenting special needs, child care, social welfare resources, contact number of parent groups, education for special needs and so on. We tried to use the easy term to be understood for general people in this database.
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