【作者】 王欢；

【导师】 李雅琴；

【作者基本信息】 天津医科大学 ， 伦理学， 2020， 硕士

【摘要】 本文旨在讨论个人医疗大数据利用中权益主体知情同意及其保护权益的伦理问题,一方面涉及个人医疗数据所承载的权益;另一方涉及权益主体知情同意本身的自主性,因此在权益和自主性价值两个层面产生争议。第一部分本文说明个人医疗数据利用中涉及的权益包括人格权益和财产权益。人格权益是个人医疗数据本身所承载的权益,财产权益是指个人医疗数据商品化中个人权益所衍生出的属性。第二部分本文具体讨论在个人医疗数据利用中的知情同意问题。第一,就知情同意所保护的权益而言,与二战后传统知情同意所保护的生命健康权益相比,在个人医疗数据利用中改变了对传统知情同意的理解,个人医疗数据所承载的利益即知情同意所保护的权益。知情同意所保护的权益从生命健康权益转变到人格权益和财产权益,这削弱了原本知情同意所保护生命健康权益的绝对重要地位,因此开启了在个人权益方面与公共利益之间发生冲突时对话的可能,即探讨数据利用者为公共利益收集、公开个人信息而损害权益主体个人权益的行为是否具有正当性;第二,就知情同意本身而言,由于数据利用者对大数据的商业使用和共享中忽视个人信息的保护,往往未征得权益主体的知情同意进而直接侵害了其自主性价值,有必要在数据共享中将权益主体知情同意本身作为原则和权利加以确定。第三部分本文从伦理理论层面,从德性论、义务论以及功利主义三个视角下探讨个人医疗数据利用中知情同意及其面临的伦理困境:公共利益与权益主体知情同意及其保护的权益之间的冲突,在德行论中斯洛特和赫斯特豪斯的理论虽然在行动上不能提供方法论,但为这对行为的评价打开不同面向;在面对义务论和传统功利主义之上相互批评:在伦理的两难困境中,义务论仅仅保护权益主体的自主性而缺乏实践合理性,传统功利主义未能保护权益主体权利与自由,黑尔的功利主义在伦理两难困境中给了实践合理性的方案说明了数据利用者为公共利益收集、公开个人信息而损害权益主体个人权益的行为具有正当性,并能够调和传统功利主义和义务论的矛盾。本文在第四部分将知情同意以原则和权利的方式确定下来,解决对权益主体知情同意及其所保护权益的伦理争议。以告知、自主以及合理限制作为保障医疗数据利用知情同意的伦理原则;在行业标准、政府监管以及立法保护中将知情同意作为权利加以确定。更多还原

【Abstract】 The purpose of this paper is to discuss the ethical issues of informed consent and protection of rights and interests of stakeholders in the utilization of personal medical data.On the one hand,it involves the rights and interests of personal medical data,and the other involves the autonomy of informed consent of stakeholders.Therefore,there are disputes on the two levels of interests and autonomy.The first part of this paper illustrates the rights and interests involved in the utilization of personal medical data,including personal rights and property rights.Personal rights and interests are the rights and interests of personal medical data itself.Property rights refer to the attributes derived from the rights and interests of individuals in the commercialization of personal medical data.The second part of this article specifically discusses the informed consent in the utilization of personal medical data.First,compared with the rights of life and health protected by the traditional informed consent after World War II,the rights and interests protected by informed consent changed the understanding of traditional informed consent in the utilization of personal medical data.The interests of personal medical data are the rights protected by informed consent.The rights and interests protected by informed consent change from life and health rights to personality rights and property rights.This weakens the absolute importance of the original informed consent to protect the life and health rights and interests,thereby opening up the possibility of dialogue when there is a conflict between personal rights and interests and public interests.That is to say,whether data users use to collect and disclose their personal information for public interest and damage their rights and interests are legitimate;second,as far as informed consent is concerned,data users often ignore the protection of personal information in the commercial use and sharing of big data,and often do not get the informed consent of the stakeholders,which directly infringes their autonomy value.It is necessary to determine the rights and interests of the stakeholders in the data sharing as the principles and rights.The third part,from the three levels of ethics theory,from the perspective of ethics,obligation and utilitarianism,probes into the informed consent and its ethical dilemmas in the utilization of personal medical data: the conflict between the interests of the public and the rights and interests of the stakeholders and their protection.In the theory of virtue,the theory of Slote and Hursthouse can not provide methodology in action,but it opens up different aspects for the evaluation of this behavior;criticizing each other on the face of the theory of obligation and traditional utilitarianism: in the dilemma of ethics,the theory of obligation only protects the autonomy of the right subject and lacks practical rationality.Traditional utilitarianism fails to protect the rights and freedoms of the rights and interests.Hare’s utilitarianism gives a practical rationality scheme in the ethical dilemma.It shows that the data user’s behavior of collecting and exposing his personal information for the public interest and damaging the rights and interests of the rights and interests of the subjects is positive.It is able to reconcile the contradictions between the traditional utilitarianism and the theory of obligation.In the fourth part,the informed consent is decided by the principles and rights,and the ethical disputes between the informed consent and the rights and interests of the rights and interests are resolved.Informed consent is defined as the right in the industry standard,government regulation and legislative protection.更多还原