醫療體系中愛滋資訊之規範與實證分析--強化感染者隱私權之觀點

A Regulatory and Empirical Analysis of Regulation and Practices on HIV/AIDS Information― From the Perspective of Improving Privacy Protection of People Living with HIV (PLWH)

陳俞璇(Yu-Syuan Chen)

指導教授 ： 張兆恬

國立交通大學/科技法律學院/科技法律研究所/碩士(2019年)

摘要

我國社會對於愛滋病長期存有誤解，甚至汙名化，導致感染者生活上許多權利受到損害，包括就醫權利，感染者揭露感染狀態後，被醫院、診所轟出去的消息在所多有。今日網路科技的發達，更將醫療歧視的效應擴大化。然而，我國尚未將隱私權概念導入、落實在醫療資訊中，從人類免疫缺乏病毒傳染防治及感染者權益保障條例、傳染病防治法，再到相關醫事法規（如醫療法、醫師法等），可見醫療體系對於醫療資訊僅停留在「負有保密義務」之觀念，愛滋資訊亦因被定位成有防疫需要，而被廣泛蒐集、無須得其同意。
本文以美國加州、紐約州、康乃狄克州州法作為比較法研究對象，發現三者皆將愛滋資訊作為特殊保護客體，在蒐集、處理、利用過程中有不同程度的資訊主體同意。本文實證研究部分，以醫方、病方、官方以及法律學者為質性訪談對象，針對醫療實務、我國法操作、美國法制分別提供經驗與看法，奠基本文隱私權加強之論述基礎。
自雞尾酒療法發明以來，感染愛滋病毒已成為慢性傳染病，近年相關醫學研究更證實「Undetectable = Untransmittable」（血液中測不到愛滋病毒量即不具傳染力）。現行法下，愛滋資訊廣泛且被強制蒐集的目的與手段皆應重新檢討，而醫療歧視作為愛滋資訊不當揭露、利用所帶來的不利益，政府提供的反歧視救濟其實成效不彰。本文認為，愛滋資訊的隱私保護應獲醫療體系之重視，不應一概以抽象的「醫療需要」為資訊的蒐集、利用目的（如：感染者主動揭露義務），而未有進一步適當性、必要性之檢驗。然而，個人隱私權利之行使有其界限，在特定公益目的下（如：執行職務時發生血、體液暴觸），有限縮感染者隱私權利之必要。本文研究結果為，人類免疫缺乏病毒傳染防治及感染者權益保障條例第12條第1項應刪除；同法第14條之例外揭露規定，衛福部應進一步釐清合法揭露之樣態與範圍；同法第15-1條第1項第1款之強制檢測規定，應作立法文字上的修正。最後，並建議應加強醫事再職教育中愛滋病毒相關的疾病認識、照顧技巧的訓練課程。

關鍵字

愛滋資訊 ； 隱私權 ； 醫療歧視 ； 愛滋法

並列摘要

Misunderstandings and stigmas of HIV/AIDS have existed in Taiwan’s society for a long time. Against the background of discrimination, the rights of PLWH (People living with HIV) have been undermined, especially the right to access to medical treatment. Once PLWH disclose their infected status, they are likely to be declined from treamment by physicians or clinics. The medical discrimination resulting from disclosure of HIV/AIDS information has been even more expanded with the development of information technology. However, the concept of privacy has not been fully implemented into medical practice in Taiwan. Among related laws—including the HIV Infection Control and Patient Rights Protection Act (the “HIV/AIDS Act”), the Communicable Disease Control Act, and other medical laws such as the Medical Care Act and the Physicians Act, it can be found that the medical system still embrace the idea that keeping medical information confidential is the main mechanism to protect patients’ privacy; however, the HIV/AIDS information, which should be more sensitive and highly protected, is often considered to be collectable in the name of infection prevention without seeking consent from patients.
This article takes a comparative study through examining AIDS-friendly US state laws, namely California, New York, and Connecticut laws. The three state laws all grant special protection on HIV/AIDS information by requiring different levels of consents in the process of collecting, processing, and utilizing the information. This article also interviews physicians, patients, governmental officials and legal scholars are invited as the empirical study. The respondents’ experiences and opinions on medical practice on HIV/AIDS, actual operation of law, and their responses towards the US state regulations also support this article’s argument on strengthening privacy protection.
This article reaches the following conclusions on the amendment of the HIV/AIDS Act: Article 12, Paragraph 1 of the Act should be deleted; the exception allowing disclosure stipulated by Article 14 of the HIV/AIDS Act shall be further clarified with administrative rules; the mandatory testing requirements in Article 15-1, Pargraph 1, Subparagraph 1 should be amended to prevent from being overbroad. In addtion, the knowledge of HIV caring should be also be strengthened in the continued training program of medical professions.

並列關鍵字

HIV/AIDS information ； Privacy ； Medical discrimination ； HIV/AIDS Law

參考文獻

中文文獻

一、 中文書籍

1. 台灣愛滋病學會著，李育霖、羅一鈞與洪健清編， 《臺灣愛滋病毒感染者抗愛 滋病毒藥物的治療指引》，5 版，台灣愛滋病學會出版，台北（2018）。

2. 黑川綠、藤野豐著，黃耀進譯， 《歧視―統合與排他的日本近現代史》，1 版， 游擊文化出版，台北（2017）。

3. 衛生福利部疾病管制署，愛滋病防治工作手冊，2016 年 6 月出版。 二、 期刊論文