THE APPLICATION OF RAWLSIAN THEORY TO THE EXAMINATION OF UK BIOBANK

• Main Authors: Kuan-Hsun Chen, 陳冠旭
• Other Authors: SHANG-YUNG YEN
• Format: Others
• Language: zh-TW
• Published: 2005
• Online Access: http://ndltd.ncl.edu.tw/handle/68613963203195836377

碩士 === 逢甲大學 === 財經法律研究所 === 93 === 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.