臺灣博碩士論文加值系統

「英國生物銀行計劃（UK Biobank Project）」乃英國研究疾病與基因、環境因子間關聯性之大型研究計劃，英國除了這個大型計劃之外，同時尚有其他規模較小的類似研究計劃也在進行。這些研究無疑地為疾病的預防與治療帶來莫大的希望，但希望要成真，參與者所提供的珍貴資源必須適當地歸屬才能成事，而這就涉及到規範該部分資源權利歸屬之社會制度的分配正義問題，主要的問題是分配該資源權利歸屬的社會制度應如何加以調整，方能使公平、有效、富有生產力的社會合作體系得以繼續維繫，本文於第四章進行有關之探討。
此外，「英國生物銀行計劃」之研究成果及延伸應用，可望為疾病的預防與治療帶來突破性的進展，但與此同時卻也引來了社會的疑慮。這樣的疑慮主要來自於擔心應用英國生物銀行計劃之研究成果，將演變成對人作區分之科學證據，讓人一旦被檢測出帶有疾病關聯基因，即會面臨保險上、工作機會上、人際關係上、社會評價上等各種層面的不平等對待，這主要涉及到機會平等的分配正義問題，本文第三章以此問題為核心，詳細加以探討。

This thesis explores two major challenges raised by the United Kingdom Biobank project on distributive justice. One major challenge comes from the social anxieties about inequality of opportunity resulting from natural differences among individuals disclosed by the application of the research resource of the UK Biobank. It involves fair equality of distribution of opportunities in the competition among members of society. The other major challenge is about distributive justice with regard to property rights in the UK Biobank resource. The properties in the UK Biobank resource discussed in the thesis are not only participants’ samples, which are the fundamental research objects of the UK Biobank project, but also the genetic materials which are carried in the samples.

For the discussion on issues of distributive justice, the work adopts Rawls'' theory of justice as its main approach. Although Rawls'' theory is not the only approach to distributive justice, it has arguably influenced discussions on distributive justice for several decades. To further explore issues, the thesis adopts Daniels'' theory of just healthcare, which has its roots in Rawls'' theory.

In the third chapter, which discusses the social anxieties about fair equality of opportunity, the thesis argues against the idea that the UK Biobank project leads to inequality of opportunity in the competition among members of society. Although some seriously negative natural differences can prevent an individual from being a normal competitor, a situation that may lead to inequality of opportunity, no natural differences result, directly or indirectly, from the UK Biobank project. According to Rawls, natural differences are simply natural facts and their distribution is neither just nor unjust; it is the way that social institutions deal with these facts that can be categorized as just or unjust.

To relieve social anxieties about fair equality of opportunity, the thesis explores and draws on arguments from Rawls'' view of "minimum essential capacity" and Daniels'' view of "normal species-typical functioning." The thesis takes the position that first, Rawls'' view constructs normative criteria to a moral duty for society to provide medical care to its citizens who fall below the minimum essential capacity; secondly, Daniels'' view provides scientific criteria to a moral right to health care for the individual. Although there is inharmoniousness between these two kinds of criteria, the thesis suggests that they are compatible and that Daniels'' standard is a lower threshold for health or medical care than Rawls'': a citizen is qualified for health or medical care service if his situation meets the criteria of "normal species-typical functioning" or it fails to meet such criteria but satisfies the criteria of "minimum essential capacity." The thesis argues that a right to health or medical care promotes fair equality of opportunity and helps to alleviate the social anxieties.

Although the UK Biobank is not a healthcare program but a research resource, the project can still nevertheless make a key contribution to the improvement of public health insofar as the resource provides crucial support to a diverse range of research which will improve the prevention, diagnosis and treatment of illnesses and promote health throughout society for public benefit. The thesis suggests that the project''s expected contributions can be applied as supporting evidence for a citizen to claim health care service, and argues that the project does not limit but promotes fair equality of opportunity.

Besides social anxieties about inequality of opportunity, distributive justice of property rights in the UK Biobank resource is another big issue for the project. In the fourth chapter, which discusses distributive justice of resource involved in the project, the thesis focuses on samples and genetic materials. With regard to the samples, the thesis examines the social institution of distribution of property rights in the sample and finds that participants'' consent plays a decisive role because it not only provides a mechanism for transferring the property rights in the samples from participants to the UK Biobank, but also has a huge amount of influence on the steadiness of the legal attribution of the sample rights and on the fair equality of opportunity for biobanks to compete for the limited research resource of samples. To promote the autonomy for participants'' genetic information, the thesis argues that the consent of biobanks should be informed consent. Moreover, it goes further and tries to introduce the concept of informed choice to biobanks based on a belief that a person should participate in a biobank under the condition that he or she is sufficiently informed about his or her choices with similar biobanks. The thesis demonstrates that the idea of informed choice of biobanks promotes fair equality of opportunity for them to compete for participants'' samples, which are limited resources.

In the discussion about the genetic materials, the thesis suggests distinct ways to protect the property in them and to promote distributive justice of them. The thesis argues that the part of genetic materials which debaters oppose granting a private property right is the sequencing, not the substance, because what people inherit is the former, not the latter. It applies Rawls'' idea of "common assets" to the sequencing of genetic materials and his "difference principle" with reciprocal conception to the exploitation of the sequencing. However, the thesis does not think that limitation in private property rights should be put on the substance of genetic materials. It puts forward the view that private property rules, the principle rule of properties in a democratic society, should apply to the substance of genetic materials. Both the substance of genetic materials as well as the sample can consequently be traded according to private property rules.

In the last chapter, the thesis approves of the UK Biobank project and argues that the UK Biobank project may promote fair equality of distribution of opportunities among members of the society. The thesis also proposes the property rules to regulate participants'' samples and genetic materials. In addition, the thesis offers the suggestions and concerns from the UK experience to the Taiwan Biobank project, which is going to begin its Pilot Phrase in the fourth quarter of 2005.

摘 要...... i
SUMMARY ...... ii
第一章 導論－問題之提出與研究範圍之界定...... 1
　　　第一節 問題之源起與本文的研究架構...... 1
　　　第二節 正義的理論與分配正義...... 3
　　　第三節 人類基因組資料庫之概說...... 6
　　　　　　第一項 人類基因組研究與基因組資料庫...... 6
　　　　　　第二項 基因組資料庫之種類...... 10
　　　　　　第三項 人類基因組資料庫之發展史...... 12
　　　第四節 研究動機與目的...... 15
　　　第五節 問題之提出...... 16
　　　第六節 研究方法－羅爾斯的正義理論...... 17
第二章 基因差異與分配正義...... 18
　　　第一節 羅爾斯的分配正義理論...... 18
　　　　　　第一項 正義的角色與主題...... 18
　　　　　　第二項 正義論的架構...... 20
　　　　　　第三項 正義兩原則...... 25
　　　第二節 自然樂透與機會平等...... 28
　　　第三節 羅爾斯對自然分配差異的處理...... 30
　　　第四節 小結...... 34
第三章 英國生物銀行計劃與分配正義...... 36
　　　第一節 英國生物銀行計劃概說...... 36
　　　第二節 英國生物銀行計劃與機會平等原則（Principle of Fair Equality of Opportunity） ...... 44
　　　第三節 英國生物銀行計劃與差異原則（The Difference Principle）...... 48
　　　第四節 英國生物銀行計劃與分配正義...... 52
第四章 論英國生物銀行資源之權利歸屬與分配正義...... 57
　　　第一節 英國生物銀行資源權利歸屬作為分配正義之課題...... 57
　　　第二節 英國生物銀行資源之規範－「英國生物銀行倫理暨治理架構」...... 59
　　　第三節 樣本權利歸屬與分配正義...... 64
　　　第四節 基因權利歸屬與分配正義...... 70
第五章 結論...... 83
參考文獻...... 90

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期刊論文
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