Kējì Fǎxué Pínglùn (Jun 2007)
基因資訊保護之研究⎯⎯以個人資料保護法草案為中心 The Protection of Genetic Information: AnAnalysis Focused on the Draft of the Protection of Personal Information
Abstract
基因資訊係指每人所帶之遺傳特徵及性向表現之資訊。日前我國曾推動「台灣基因資料庫」（Taiwan Biobank）之國家計畫，雖然該計畫目前暫緩，然在國家、研究機構未放棄蒐集、建立國人基因資料庫，且諸多利益催生之下，台灣人民基因資訊之權益應如何保護，遂生問題。 2005 年2 月行政院通過「個人資料保護法」修正草案（下稱草案），其中第2 條第2 款雖增列「基因」為個人資料、第6 條明定原則上禁止蒐集、處理及利用，然除此之外，對「基因」相關保護之規定，與其他個人資料如姓名、電話、教育、職業等規定無異，似未察覺基因資訊之特性，草案對基因資訊之保護，似有未足。 本文參考世界人類基因組及人權宣言、國際人類基因資料宣言等國際規範，進行分析及辯證，認為應健全並周延基因資訊保護之法制，除了就草案提出全面而具體之修正建議，以期周延基因資訊保護之外，並認為宜另訂專法以保護基因資訊為妥。 Genetic information is defined as the information that contains the hereditary characteristics and the physical features of each individual. The establishment of the Taiwan Biobank, a national program, has been merely introduced. Moreover, concerning great interests, research institutes and various related organizations have continued to make progress in the collection and establishment of a national genetic database. Although the program has been halted at present, the protection of the benefits of the genetic information of the Taiwan People still became a challenge. In February 2005, a bill of amendment1 was passed, protecting the privacy of personal information. In the document, “genetic information” has been classified as personal in article 2(2), and the collection and usage of such are restricted by article 6. However, other than the above mentioned, it is difficult to differentiate genetic–protection-related regulations from those regarding other personal data, such as name, phone number, education, and occupation. This kind of arrangement in the bill ignores the unique features of genetic information, therefore, results in an incomplete protection. This article referred to several international regulations, including the Universal Declaration on the Human Genome and Human Rights and the International Declaration on Human Genetic Data. After thorough analysis and discretion, the author argues that the regulations concerning the protection of genetic information need to be fully developed. Besides proposing overall and detailed suggestions of amendments, a specific law is required to improve the protection of genetic information.
