講演情報
[P31-2]難病診療の遺伝カウンセリングに関する現状認識と解決策の提案
○三宅 秀彦1,2, 小杉 眞司3, 櫻井 晃洋4, 川目 裕5, 松尾 真理6, 佐々木 元子1,2, 由良 敬1,2, 高島 響子7, 李 怡然8, 神原 容子2, 松川 愛未9, 大住 理沙10 (1.お茶の水女子大学 基幹研究院 自然科学系, 2.お茶の水女子大学 ヒューマンライフサイエンス研究所, 3.京都大学, 4.札幌医科大学, 5.東京慈恵会医科大学, 6.東京女子医科大学, 7.国立国際医療研究センター, 8.東京大学, 9.国立がんセンター東病院, 10.浜松医療センター)
Since many intractable diseases are hereditary, genetic counseling is required in the treatment of intractable diseases. We decided to clarify the issues of genetic counseling in the medical system for intractable diseases, and to formulate a proposal for solving these issues.
First, we surveyed the issues related to the provision of genetic counseling at medical institutions designated intractable disease. Next, the need for genetic counseling for intractable diseases was investigated for the research group on intractable diseases. From these results, we prepared a draft of proposal for resolving the issues for providing genetic counseling for intractable diseases. Moreover, we conducted questionnaire study for stake holders of healthcare in intractable disease to evaluate the draft. Finally, we completed our proposal for solving the problems of genetic counseling in Japan.
Outline of our proposal to improve the system of providing genetic counseling in Japan are as follows: 1) to ensure the provision of genetic counseling, 2) to understand that the role of genetic counseling is to deal with psychosocial issues, including those of relatives, and 3) to promote awareness of genetic counseling. To realize these goals, it is necessary to establish cooperative framework for genetic counseling, that constitute among medical institutes, government, and academia. Furthermore, stabilization of human resources, quality assurance system for genetic counseling, and health insurance coverage for psychosocial support are desirable.
First, we surveyed the issues related to the provision of genetic counseling at medical institutions designated intractable disease. Next, the need for genetic counseling for intractable diseases was investigated for the research group on intractable diseases. From these results, we prepared a draft of proposal for resolving the issues for providing genetic counseling for intractable diseases. Moreover, we conducted questionnaire study for stake holders of healthcare in intractable disease to evaluate the draft. Finally, we completed our proposal for solving the problems of genetic counseling in Japan.
Outline of our proposal to improve the system of providing genetic counseling in Japan are as follows: 1) to ensure the provision of genetic counseling, 2) to understand that the role of genetic counseling is to deal with psychosocial issues, including those of relatives, and 3) to promote awareness of genetic counseling. To realize these goals, it is necessary to establish cooperative framework for genetic counseling, that constitute among medical institutes, government, and academia. Furthermore, stabilization of human resources, quality assurance system for genetic counseling, and health insurance coverage for psychosocial support are desirable.