Genetic Testing and the Future of Disability Insurance: Ethics, Law & Policy

Predictive genetic testing poses fundamental questions for disability insurance, a crucial resource funding basic needs when disability prevents income from work. This article, from an NIH-funded project, presents the first indepth analysis of the challenging issues: Should disability insurers be permitted to consider genetics and exclude predicted disability? May disabilities with a recognized genetic basis be excluded from coverage as pre-existing conditions? How can we assure that private insurers writing individual and group policies, employers, and public insurers deal competently and appropriately with genetic testing?     

Surrogacy,Identity, Parentage and Childrenʼs Rights – Through the Eyes of a Child

In this article I will focus on two important aspects of children's rights which are impacted by artificial reproductive technology (particularly surrogacy); being the rights to identity and the rights to legal parentage. The United Nations Convention on the Rights of the Child acknowledges the importance of a child's right to identity, to be protected from discrimination on the basis of the status or beliefs of the child's parents, legal guardians or family members. For many children born through surrogacy arrangements, they may have only one or no legally recognized parent. The adults caring for them may have parental responsibility orders but this falls well short of providing children with the benefits and protections that legal parentage does. The issue of identity can be complex. Increasingly, states have recognized the importance of children knowing the circumstances of their birth and being able to access biological and genetic information including medical information. From a child's perspective the issues of identity and parenthood are intertwined. Given the importance of identity, more needs to be done to ensure that identifying information about children born as a result of artificial reproductive technology is properly stored and readily accessible for these children. Denying a child legal parentage when there are no concerns about the care being provided by their parents cannot be justified when considered from a children's rights perspective.     

Disentangling privacy from property: toward a deeper understanding of genetic privacy

With the mapping of the human genome, genetic privacy has become a concern to many. People care about genetic privacy because genes play an important role in shaping us--our genetic information is about us, and it is deeply connected to our sense of ourselves. In addition, unwanted disclosure of our genetic information, like a great deal of other personal information, makes us vulnerable to unwanted exposure, stigmatization, and discrimination. One recent approach to protecting genetic privacy is to create property rights in genetic information. This Article argues against that approach. Privacy and property are fundamentally different concepts. At heart, the term "property" connotes control within the marketplace and over something that is disaggregated or alienable from the self. "Privacy," in contrast, connotes control over access to the self as well as things close to, intimately connected to, and about the self. Given these different meanings, a regime of property rights in genetic information would impoverish our understanding of that information, ourselves, and the relationships we hope will be built around and through its disclosure. This Article explores our interests in genetic information in order to deepen our understanding of the ongoing discourse about the distinction between property and privacy. It develops a conception of genetic privacy with a strong relational component. We ordinarily share genetic information in the context of relationships in which disclosure is important to the relationship--family, intimate, doctor-patient, researcher-participant, employer-employee, and insurer-insured relationships. Such disclosure makes us vulnerable to and dependent on the person to whom we disclose it. As a result, trust is essential to the integrity of these relationships and our sharing of genetic information. Genetic privacy can protect our vulnerability in these relationships and enhance the trust we hope to have in them. Property, in contrast, by connoting commodification, disaggregation, and arms-length dealings, can negatively affect the self and harm these relationships. This Article concludes that a deeper understanding of genetic privacy calls for remedies for privacy violations that address dignitary harm and breach of trust, as opposed to market harms, as the property model suggests.     

论我国基因信息不知情权的确立

基因信息对健康状况具有强烈的预测性,出于诸种原因当事人未必想知晓基因信息.为充分尊重自我决定权,比较法上承认权利人享有基因信息不知情权.基因信息不知情权指权利人有权预先决定是否接受基因信息的披露,其核心要义为“知情拒绝权”.基因信息不知情权旨在保障权利人对基因信息的自主控制,在我国隐私权与个人信息区分规制的立法模式下,...     

Overcoming Doctrinal School Thought: A Unifying Approach to Human Dignity

The concept of human dignity is criticized due to its vagueness, but by discussing the most important schools of thought, we can identify a core meaning that is common to most understandings of human dignity: Whether we conceptualize human dignity in terms of autonomy, self‐respect, social acts, or equal status, we always refer to some kind of personal identity. This personal identity consists in those aspects that we consider to be constitutive of our individual personality. Instead of remaining within doctrinal school thought, this core meaning can be taken as a common denominator for human dignity discourse.     

A nation's genes for a cure to cancer: evolving ethical, social and legal issues regarding population genetic databases

The advent of the human genome sequence has focused research on understanding underlying genetic links to complex diseases such as cancer, asthma and heart disease. In the past few years, individual countries, such as Iceland, Estonia, Singapore and the United Kingdom, have created national databases of their citizens' DNA for comparative research. Most recently, an international consortium including Nigeria, Japan, China and the United States launched a $100 million project called the International HapMap to map the human genome according to haplotypes, blocks of DNA that contain genetic variation. Such population genetic databases present challenging ethical, social and legal issues, yet regulation of genetic information has developed sporadically, from region to region, without a consistent international standard. Without a clear understanding of the consequences of genetic research in terms of individual and community-wide discrimination and stigmatization, genetic databases raise concerns about the protection of genetic information. This Note provides a survey of the evolving landscape of population genetic databases as a legislative and public policy tool for national and international regulators. It compares different approaches to regulating the collection and use of population genetic databases in order to understand what areas of consensus are formulating a foundation for an international standard. As the first population genetics project that will span multiple countries for the collection of DNA, the International HapMap has the potential to become an influential standard for the protection of population genetic information. This Note highlights issues among the national databases and the HapMap project that raise ethical, social and legal concerns for the future and recommends further protections for both individual donors and community interests.     

评美国反基因歧视法律实践及其启示

为防治基因技术的滥用和基因信息歧视,以《2008年禁止基因信息歧视法》为代表的美国联邦和州立法积极实施干预,以确保所有人雇佣机会平等、享有平等健康保险待遇,全面参与社会生活.美国反基因歧视法内容详尽,既禁止基因信息歧视行为,又兼顾保险公司、雇主的合理要求以及避免可能给第三人及公众带来的风险,使违法行为几乎“无缝隙可钻”,且法律对公立雇主的要求高于私立雇主.美国反基因歧视法律实践,对于我们客观认识和把握平等权,完善相关立法和公共政策,具有一定启迪.     

Establishing Identity: How Direct‐to‐Consumer Genetic Testing Challenges the Assumption of Donor Anonymity

The rise of direct‐to‐consumer genetic testing is challenging the rules and expectations of the fertility industry concerning donor anonymity. While ethicists debate whose rights should prevail, many donor conceived people, recipient parents and donors are currently sharing their genetic information, along with methods to identify genetic links, in vast online communities, invalidating donor anonymity and providing a platform for those who advocate globally for legislative change to support donor‐linking practices. This article looks at why it is important to access this information in relation to identity and kinship formation and how the Family Court Community can apply this knowledge in order to achieve better outcomes for children and families.     

Genetic variation and relationships at five STR loci in five distinct ethnic groups in China

Five short tandem repeat (STR) systems of TH01, vWA, LPL, F13B and FES/FPS were investigated in five ethnic groups living in China (Tujia, Miao, Bai, Chaoxian and Han). All five loci did not deviate from the Hardy-Weinberg equilibrium (P>0.05). At the five loci of each ethnic group, the observed heterozygosity, the mean exclusion chance (MEC), and the power of discrimination (PD) ranged from 0.42 to 0.86, from 0.20 to 0.66 and from 0.61 to 0.95, respectively. For the five ethnic groups, the combined MEC and combined PD were >0. 9360 and >0.9998, respectively, suggesting that combinations of these five systems are feasible for DNA typing in forensic investigations such as personal identification or paternity testing. Furthermore, the allelic frequencies at the five loci suggested that these five ethnic groups were distinctly different communities. Judging from the phylogenetic tree constructed based on the genetic distance among the five ethnic groups, Han, Chaoxian and Tujia were involved in an identical cluster, and Miao and Bai in another. These findings indicate that each of the five groups examined is not only a distinct community, but also has a relationship with each of the others.     

云南苗族常染色体STR遗传多态性及其遗传结构分析

目的研究云南苗族常染色体9个STR基因座遗传多态性并分析其遗传结构。方法采用荧光标记PCR复合扩增、基因扫描自动分型技术调查了87名云南苗族无关健康个体9个STR基因座等位基因分布情况。结果9个基因座共检出52种等位基因和109种基因型,等位基因频率分布在O．0057～0．7184。经计算杂合度（H）为0．4023-0．8161、多态信息量（PIC）为0．4090～0．8057、个体识别力（DP）为0．6429。0．9436、非父排除率（PE）为0．1153～0．5654。X^2检验显示所有基因座均符合Hardy—Weinberg平衡。聚类分析结果显示．苗族、僳僳族、傣族、德昂族、普米族及景颇族遗传关系较近。结论为进一步研究STR遗传结构奠定了基础．在人类学、法医学等领域也有重要的应用价值。     

个人信息权的宪法(学)证成——基于对区分保护论和支配权论的反思

《个人信息保护法》最终纳入“根据宪法”条款,表征着个人信息保护法律体系在底层逻辑上的更动。民法学上权利与利益的区分保护原理,难以适用于整个合宪性法秩序。应将个人信息权确立为宪法位阶的基本权利,并以基本权利作为针对国家的主观防御权和辐射一切法领域的客观价值秩序的原理,协调个人信息保护的私法机制和公法机制。通过对人权条款笼罩下的通信权和人格尊严条款的解释,可以在学理上证立“基本权利束”性质的个人信息权。但其具体保护则应分别归入不同基本权利条款,作出区分化、差异化的多层次构造。个人信息保护的支配权思维有其局限,告知同意模式的式微是重要表现。应将个人信息权的规范目标调整为人格的自由发展,指向免于他人的人格干预。从支配权到人格发展权的思维转换,有助于规制对已收集信息的不当利用、破除“信息茧房”、缓和个人信息保护与利用之间的紧张,以及在“个人—平台—国家”的三方关系中有效保护个人的自决,同时为数据产业保留发展空间。     

Genetic Testing and the Future of Disability Insurance: Thinking about Discrimination in the Genetic Age

This article considers the future of genetic testing and disiblity insurance, and explores the potential for discrimination when using genetic information.     

26个Y-STR基因座遗传多态性及突变调查

目的 调查26个Y-STR基因座的突变率和遗传多态性,研究其法医学应用效能.方法 本文以575对蒙古族父子对为模板,统计26个Y-STR基因座的突变率,并且研究26个Y-STR基因座在黑龙江省蒙古族、江西省汉族及福州市汉族等3个地区777个无关男性个体中的遗传多态性,评估该试剂盒的法医学应用价值.结果 26个Y-STR...     

Genetic polymorphism of 30 autosomal InDel loci in Chinese Hainan Li population

A novel genetic marker, Insertion/Deletion polymorphism (InDel) shows remarkable potential for forensic DNA applications. Hainan Island is the southernmost and the second largest island in China, of which the Li ethnic group is regarded as the original inhabitants. In this study, 207 individual samples of Li ethnic group from Hainan were genotyped using Investigator DIPplex kit which contains 30 autosomal InDels and Amelogenin. Allele frequency and forensic parameters were calculated for these loci. Several deviations from Hardy-Weinberg equilibrium (HWE) and linkage disequilibrium (LD) may indicate founder effect in the Li ethnic group. The combined power of discrimination (CPD) and the cumulative probability of exclusion (CPE) reached 0.99999999992912 and 0.9861, respectively. These results suggested that the kit was effective for personal identification in Hainan Li population. The population comparisons through the Nei’s standard genetic distance (R_st), phylogenetic tree, multidimensional scaling analysis (MDS), principal component analysis (PCA), and STRUCTURE analyses along continental divisions manifested that the 30 InDels panel had a certain intercontinental differentiation ability.     

Ethnic identity and attitudes toward the police among African American juvenile offenders

Although there is a knowledge base regarding theoretical and empirical research on attitudes toward the police, this line of research has not fully examined the sources of such attitudes, and in particular the extent to which attitudes toward the police are influenced by ethnic identity. The present study examined the role of ethnic identity in African American adolescent offenders' perceptions of general police discrimination, direct police contact, procedural justice, and police legitimacy. Analyses showed that youth with a stronger sense of ethnic identity perceived more police discrimination but reported more positive beliefs about police legitimacy. The findings underscore the importance of considering processes that may make legal socialization experiences more salient for adolescents, and demonstrate the complex role that ethnic identity plays in relation to discrimination.     

Genetic discrimination: the use of genetically based diagnostic and prognostic tests by employers and insurers

Genetic discrimination is detrimental to public health programs, as well as to society generally. Advances in genetic testing and screening, accelerated and prompted by the Human Genome Initiative, increase society's ability to detect and monitor chromosomal differences. These technologies and their resulting genomic data will enhance medical science, but may also encourage discrimination. Although few employers or insurers currently utilize genetic screening, testing or data, rising employee benefit costs and market forces create powerful incentives for usage. Current municipal, state and federal laws, including the Americans with Disabilities Act (ADA), may not sufficiently protect employees and insureds from genetic discrimination. While municipal and state protections should not be overlooked, the ADA's sweeping scope may currently provide the most comprehensive safeguard. Federal laws banning discrimination on the basis of race or sex might also successfully redress some forms of genetic discrimination. Genetic technologies' advent necessitates efforts to rectify state and federal statutory coverage gaps, strictly regulate employers and produce comprehensive guidelines regarding its use.     

Is victim identity in genocide a question of science or law? The scientific perspective,with special reference to Darfur

In genocide, victims must represent an ethnic, racial, religious or national group. But is victim identity a question of science or law? Must victims be a socially recognized group or can group identity exist solely in the mind of the perpetrator? This question is relevant to the on-going crisis in Darfur. The “Arab-on-African” violence depicted in the media encompasses identities not shared by Darfurians. This study details an evaluation of victim identity in Darfur, based on field research and literature review. Darfurians are defined by subsistence strategy and economic groups are not protected under genocide law. Whether Darfur is genocide depends on whether victims must conform to scientific group classifications or need only be defined by their relationship to the perpetrators.     

基因权的私法证成和价值分析

人类基因本质上是一种人格利益,通过法解释的路径能够在私法上生成基因权概念。在私法上,基因权是人基于自己的特定基因而享有的权利,属于人格权范畴,包括基因平等权、基因自主权、基因隐私权、基因公开权等。基因公开权具有财产权属性,是基因人格权在不可让渡规则下的延伸,公开只是基因人格利益的物化之利用。基因权存在的正当性基础在于自然权利的实质法源。基因权的法价值在于人性尊严之表彰、人格利益之维护、技术理性之历练等方面。     

Migrants,State Responsibilities,and Human Dignity

This article addresses two questions: First, how does the value of human dignity distinctively bear on a state’s responsibilities in relation to migrants; and, secondly, how serious a wrong is it when a state fails to respect the dignity of migrants? In response to these questions, a view is presented about the distinction between wrongs that violate cosmopolitan standards and wrongs that violate the standards that are distinctive to a particular community; about when and how the contested concept of human dignity might be engaged; and, elaborating a three-tiered and lexically ordered scheme of state responsibilities, about how we should assess the seriousness of a state’s failure to respect the dignity of migrants.     

体育运动中性别歧视的法律规制简

体育性别歧视是体育运动中对某种性别参与者的不平等对待.奥林匹克运动有性别歧视的传统.体育性别歧视的样态表现在：体育参与机会不均等、同工不同酬和体育性骚扰.它侵权的类别有：体育参与权、体育劳动权和体育人格权.反体育性别歧视的法律制度体现在国际公约方面和国内立法方面.体育性别歧视法律应对机制存在不足,应该对其进行完善.