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題名：遺傳疾病病患隱私與親屬利益衝突之倫理法制探討
書刊名：東吳法律學報
作者：陳俞沛／林建智 引用關係／林秀娟
作者(外文)：Chen, Yu-pei／Lin, Jan-juy／Lin, Shio-jean
出版日期：2012
卷期：24:2
頁次：頁35-81
主題關鍵詞：遺傳疾病；基因資訊；病患隱私；通報制度；Hereditary disease；Genetic information；Privacy；Report system
原始連結：連回原系統網址new window
相關次數：
  • 被引用次數被引用次數:期刊(2) 博士論文(0) 專書(0) 專書論文(0)
  • 排除自我引用排除自我引用:2
  • 共同引用共同引用:1732
  • 點閱點閱:224
隨著基因科技的發展，遺傳疾病的防治亦有突破，然因其具家族特性，主管機關為有效控制重大遺傳疾病保護家族成員之利益，應先建立病友登記制度，再透過疾病之遺傳特性與家族圖譜分析，通知具遺傳風險之親屬，儘早採行預防措施以降低傷害程度。然醫事人員之「通報制度」與警告家族成員之行為皆可能侵犯病患隱私，在面對病患與親屬間之利益衝突時，國內外皆有倫理法制以玆遵循，但確常有欠缺明確標準之情形。我國新個人資料保護法實施後，對醫療、基因等資料採更嚴格的保護，恐將無法由醫事人員告知親屬，其問題更顯嚴重。本文對我國現行倫理法制提出檢討，並建議醫事人員應依法通報主管機關，由主管機關通知病患親屬，依其自願查詢遺傳風險，但應避免透露病患身分。如此既能兼顧病患隱私保護與親屬利益，又能達成防治遺傳疾病之政策目的。
With the development of genetic technology, there are some breakthroughs in the prevention and management of hereditary diseases, however, the genetic information involves familial traits and privacy. In order to prevent effectively the recurrence of serious hereditary diseases, the health authority should set up reporting system and provide assistance to family members who are at risk of inheritance. Through the service of genetic counseling, family pedigree can be analyzed and hereditary risk can be calculated. As a result, the family members can take related preventive measures to reduce the harm. Nevertheless, both of the reporting system and the action of warning to family members might invade the patient's privacy. When it comes to the situation of conflict of interests between the patient and family members, there are some professional ethic rules regulating the related affairs in Taiwan and abroad. However, the contents of these professional ethic rules are not clear and definite. In Taiwan, there are stricter provisions to limit the usage, disclosure and release of personal information including genetic information in the ”Personal Information Protection Act”. According to the aforesaid Act, the is not allowed the medical personnel to release related information to the patient's relatives. This paper suggests that the medical personnel are obliged to report the related genetic information to the authority that should set up a registration and notification system to notice the family members who are at risk of inheriting a serious disease without disclosing the patient's identity. With the implementation of reporting, we could achieve these goals of protecting the patient's privacy and blood relation's interests and implement of policy of the prevention and control of hereditary diseases.
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