Telling stories: metaphors of the Human Genome Project

Scientists of the Human Genome Project tend to rely on three metaphors to describe their work, each of which implicitly tells much the same story. Whether they claim to interpret the ultimate “book,” to fix a flawed “machine,” or to map a mysterious “wilderness,” they invariably cast the researcher as one who dominates and exploits the Other. This essay, which explores the ways such a story conflicts with feminist values, proposes an alternative.     

基因的产业化道路

人类基因组研究产业化是科技转化为生产力的有效途径 ,其运作方向有以下 6个。1　争夺基因专利人体共有约 3万～ 4万个基因[1] ,人类基因组只有一套 ,世界各国投入巨资寻找基因的研究实为一场“基因争夺战” ,“基因侦探们”对这些基因逐个探索 ,一一破译 ,发现一个少一个 ,谁占有较多的基因专利 ,谁就将在人类基因的商业开发方面 (包括基因药物、基因诊断、基因治疗等 )争得先机。由于ｃＤＮＡ是基因工程制药的基础 ,具有巨大的商业价值 ,因而成为“基因争夺战”的焦点。许多企业投入巨资进行ｃＤＮＡ的克隆和测序 ,再经功能鉴定 ,进而申请…     

人类基因组计划在西方引发的人性观思考

人类基因组计划在西方世界引起了相当广泛深入的关于人性观的思考。分子生物学的研究成果正在重新塑造人们对人类进化史和人类本身的认识。基因工程、干细胞研究等前沿领域产生的问题促使人们转向西方的传统哲学去寻找思想资源。尽管遗传决定论的陈旧观点在大众文化中仍时有所见。新的基因组学研究已开始采纳一种更全面的、兼顾历史与社会文化因素的角度。     

The next exclusion debate: assessing technology, ethics, and intellectual disability after the Human Genome Project

Recent scientific discoveries have made it much easier to test prenatally for various genetic disabilities, such as Down syndrome. However, while many observers have heralded such "advances" for their effectiveness in detecting certain conditions, others have argued that they perpetuate discrimination by preventing the birth of children with disabilities. This article examines the ethical and social implications of the Human Genome Project for individuals with intellectual disabilities and their families. It details the critique of prenatal testing articulated by many disability rights activists as well as scholarly and professional responses to that critique. A review of the pertinent research literature includes perspectives of genetic professionals, ethicists, disability studies scholars, parents of children with disabilities, and disabled individuals themselves. Finally, the article explores how future research endeavors, policies, and practices may more effectively integrate and respect the positions of these various stakeholders.     

Scientific limitations and ethical ramifications of a non-representative Human Genome Project: African American response

The Human Genome Project (HGP) represents a massive merging of science and technology in the name of all humanity. While the disease aspects of HGP-generated data have received the greatest publicity and are the strongest rationale for the project, it should be remembered that the HGP has, as its goal the sequencing of all 100,000 human genes and the accurate depiction of the ancestral and functional relationships among these genes. The HGP will thus be constructing the molecular taxonomic norm for humanity. Currently the HGP genomic baseline is almost exclusively skewed toward North Atlantic European lineages through the extensive use of the Centre d’études du Polymorphisme Humaine (CEPH) data set. More recently, the HGP has shifted to the use of volunteer donors since adequate informed consent had not been secured from the CEPH families. No evidence exists that either the CEPH families or the current volunteers are the most appropriate demographic or evolutionary lineages for the functional genomic studies that will guide production of new DNA based drugs, targeted therapeutics and gene-based diagnostics. The lack of scientific representativeness of the HGP is a serious impediment to its broad applicability. Yet this can be remedied, and five alternative sampling strategies are presented. In response to the current exclusionary design of the HGP, there is noteworthy caution and skepticism in the African American community concerning genetic studies. The Manifesto on Genomic Studies Among African Americans reflects both a desire to be systematically included in federally funded genomic studies and a desire to maintain some control over the interpretation and application of research results. Representative sampling in the HGP is seen as an international human rights issue with domestic ethical implications.     

The Icarus Project: A Counter Narrative for Psychic Diversity

Over the past 12 years, I’ve had the good fortune of collaborating with others to create a project which challenges and complicates the dominant biopsychiatric model of mental illness. The Icarus Project, founded in 2002, not only critiqued the terms and practices central to the biopsychiatric model, it also inspired a new language and a new community for people struggling with mental health issues in the 21st century. The Icarus Project believes that humans are meaning makers, that meaning is created through developing intrapersonal and interpersonal narratives, and that these narratives are important sites of creativity, struggle, and growth. The Icarus counter narrative and the community it fostered has been invaluable for people around the world dealing with psychic diversity—particularly for people alienated by mainstream approaches. But, despite the numbers of people who have been inspired by this approach, the historical background of the Icarus Project is hard to find. It exists primarily in oral history, newspaper articles, unpublished or self-published Icarus documents, and in internet discussion forums. As the co-founder of the Icarus Project, I use this article to make my understanding of that history and its key documents more widely available.     

人类基因测序:民间挑战政府

人类基因测序工作 ,是继“曼哈顿”原子弹计划、“阿波罗”登月计划之后的人类第三大自然科学计划。这一计划实施的过程中 ,杀出了一支由私营企业支持的民间科学队伍 ,向政府研究机构叫板 ,其意义不在计划本身之下 ,尤其是后者居然占据上风。仔细研究这一过程对指导我们今后的科学研究具有重大意义。1　物种起源与遗传根据达尔文的生物进化论 ,所有的生物来自于同一起源 ,生物由低等生物向高等生物进化 ,人类只是这株进化树上最为先进、智力也最高的生物而已。185 9年 ,达尔文发表《物种起源》时 ,还避免提及人类。因为 ,这毕竟有违宗教的上…     

从年级、元理解策略指数看小学生阅读说明性文本的理解监控策略

该研究旨在了解年级、元理解策略指数,理解监控策略,对阅读理解的成绩的影响。研究表明年级高,元理解策略指数高的学生多采用全局语境的监控策略,成绩较好;年级低,元理解策略指数低的学生多采用局部语境的监控策略,成绩较差。     

Framing (implicitly) matters: The role of religion in attitudes toward immigrants and Muslims in Denmark

Denmark is currently experiencing the highest immigration rate in its modern history. Population surveys indicate that negative public attitudes toward immigrants actually stem from attitudes toward their (perceived) Islamic affiliation. We used a framing paradigm to investigate the explicit and implicit attitudes of Christian and Atheist Danes toward targets framed as Muslims or as immigrants. The results showed that explicit and implicit attitudes were more negative when the target was framed as a Muslim, rather than as an immigrant. Interestingly, implicit attitudes were qualified by the participants’ religion. Specifically, analyses revealed that Christians demonstrated more negative implicit attitudes toward immigrants than Muslims. Conversely, Atheists demonstrated more negative implicit attitudes toward Muslims than Atheists. These results suggest a complex relationship between religion, and implicit and explicit prejudice. Both the religious affiliation of the perceiver and the perceived religious affiliation of the target are key factors in social perception.     

The Withdrawal of Human Projection (Book)

It is possible that religious conversion may be particularly likely at certain times in the life cycle. Many psychological studies on conversion have suggested that adoles- cence, a prime time for conflict, identity crisis, and searching, is the most favorable time for religious conversion. This article presents the results of a research (Kose, 1996) based on interviews with 70 native British converts to Islam that revealed conversions are more likely to occur beyond adolescence. The average conversion age was found to be 29.7 years.     

关于功利、理性或关怀--不同理论在评价人类基因组研究中的差异

从功利主义的角度审视治疗性克隆,治疗性克隆研究能够为人类造福,是可以得到辩护的.义务论认为,胚胎不能作为试验的客体,反对治疗性克隆研究.而关怀理论学家则不支持治疗性克隆研究.