Knowledge and Attitudes Towards Genetic Testing: A Two Year Follow-Up Study in Patients with Asthma,Diabetes Mellitus and Cardiovascular Disease

Adequate knowledge and personal attitudes towards DNA-testing are major determinants of optimal utilization of genetic testing. This study aims to (1) assess the genetic knowledge and attitude towards genetic testing of patients with asthma, diabetes mellitus type II and cardiovascular diseases, (2) determine whether their knowledge or attitude changed since 2002, and (3) investigate the predictive role of knowledge on attitude. Data were collected within the Panel of Patients with Chronic Diseases in 2002 and 2004, resulting in 398 data-pairs. Results show that factual knowledge mainly relates to associations between genes and diseases, less is known on associations between genes, chromosomes, cells and body. The perceived knowledge on DNA-testing has not increased since 2002. The attitude towards genetic testing also appeared to be rather consistent. Less perceived medical genetic knowledge and more perceived social genetic knowledge were found predictive for a more reserved attitude towards genetic testing. In conclusion, advanced developments in the field of genetics are not accompanied by increased knowledge of patients with common multi-factorial diseases. The finding that more perceived social genetic knowledge results in more reluctance can be considered an indicator for the necessity of social debates on genetic testing.     

信息在人类中传递处理的特点和其进化上的意义

人类信息在世代之间传递有两种途径:一种是依靠遗传,一种是通过非遗传的途径。遗传信息主要靠遗传基因来携带和传递,对个体的生存和延续是最重要的。而非遗传信息主要靠感觉和学习来获得,这种籍传媒的信息获取可能在人类中才具有。为何在生物进化上,要采用这种先天遗传,后天习得,这种两条腿走路的方式来在传布信息呢?目前尚没有一个合理的解释。在本文中我们分别就这两个方面发展进行论述。     

GENETIC AND REPRODUCTIVE TECHNOLOGIES IN THE LIGHT OF RELIGIOUS DIALOGUE

Since the gene splicing debates of the 1980s, the public has been exposed to an ongoing sequence of genetic and reproductive technologies. Many issue areas have outcomes that lose track of people's inner values or engender opposing religious viewpoints defying final resolution. This essay relocates the discussion of what is an acceptable application from the individual to the societal level, examining technologies that stand to address large numbers of people and thus call for policy resolution, rather than individual fiat, in their application. A major source of guidance is the “Genetic Frontiers” series of professional dialogues and conferences held by the National Conference for Community and Justice from 2002 to 2004. Genetic testing, human gene therapy, genetic engineering of plants and animals, and stem cell technology are examined. While differences in perspective on the beginning of life persist, a stepwise approach to the examination of genetic testing reveals areas of general agreement. Stewardship of life, human co‐creativity with the divine, and social justice help define the bounds of application of genetic engineering and therapy; compassionate care plays a major role in establishing stem cell policy. Active, sustained dialogue is a useful resource for enabling sharing of religious values and crystallization of policies.     

非医用胚胎植入前基因诊断性别的伦理思考

对胚胎植入前基因诊断(PGD)性别的非医学用途,尚有很多争议。从伦理学角度考虑,非医用PGD性别选择存在文化差异,在亚洲一些国家可能会引起人口性别比失衡以及性别歧视等,在西方一些国家可能不存在类似问题。     

人格研究中的行为遗传学取向的发展

人格的行为遗传学研究,是以研究遗传和环境的差异来解释人格的个体差异的程度为目的,为探讨遗传和环境在个体发展中的作用提供了新的研究途径。该文以天性和教养为突破口,紧紧围绕行为遗传学在人格研究领域的发展脉络:遗传力、环境、特定基因的研究,进一步探讨在个体人格发展过程中遗传和环境的交互作用的关系。     

Nondirectiveness and genetic counseling

Nondirectiveness is the generally required and professed standard for genetic counseling. However, studies are lacking in the field of human genetics and in other disciplines which address either the theory or practice of this type of therapeutic procedure in the context of genetic counseling. Moreover, there is no indication the further development this concept has undergone in client-centered therapy has been acknowledged in human genetics. This could be due tot he historical development of genetic counseling, its inherent conflicts and often undefined goals, and the latent need of human geneticists to defend themselves against being accused of eugenic tendencies. Nondirectiveness and directiveness, however, can neither adequately describe what takes place in genetic counseling, nor can they — according to their original meaning — be used to define an ethical standard of genetic counseling. Starting with the writings by Carl Rogers (1942), an experiential approach is described, in which counseling is seen as a process of influence, which is wished by all the persons involved, during which activities are oriented toward the experience of the client, and which allows the counselor to communicate openly and directly with the client. The present study illustrates the use of the experiential approach in genetic counseling and shows that it can uphold the principle of ethics, which nondirectiveness demands and, at the same time, prevent the inevitable and unresolvable contradictions. This means that in their training genetic counselors must learn to recognize and constantly reflect on the influence they can and want to exert. In order to be able to use this influence in a responsible manner, genetic counselors must also learn to have a certain degree of flexibility so that they are able to check at any time how their client responds to this influence.     

An assessment of teratology training provided by masters level genetic counseling programs

The increasing demand in the clinical genetics setting for information about teratogen exposures has created a need for genetic counselors to have the capabilities to appropriately address patient concerns. In order to assess how training in teratogen counseling is currently being conducted, the GLaRGG Teratogen Subcommittee surveyed all 17 genetic counseling training programs in North America in September 1993. Information was obtained from training programs about coursework, resources, and clinical training. In addition, each training program was asked to provide information about how their teratogen training needs could better be met. While all programs responded that some information in their coursework applicable to teratogen counseling was provided, there was wide variation in the amount of time devoted to this topic. The programs also greatly differed in the provision of clinical training in teratogen counseling. For both coursework and clinical work, genetic counselors were the main trainers in teratogen counseling. In spite of this, fewer than 25% of training programs have a defined teratogen clinical rotation. Data from the survey are discussed and recommendations presented.     

抑郁遗传效应的发展动态性

抑郁的遗传效应存在发展动态性。一方面,在发展过程中,抑郁的遗传率会发生改变,抑郁的风险基因及其与环境的交互作用模式也存在动态变化。另一方面,遗传因素会影响抑郁的发展变化模式。通过梳理既有相关研究,本文从生理成熟因素、表观遗传和发展级联效应三方面分析抑郁遗传效应发展动态性的原因。未来研究应区分重要发展阶段,增加脑功能、性激素、神经生物蛋白以及表观遗传等指标考察抑郁遗传效应的变化模式及其发生机制。     

儿童基于心理本质论的种族认知及其影响因素

心理本质论将类别成员视为由共同的本质所决定,且这些本质对应着一些表面的不可改变的属性。其中,种族本质论就是心理本质论的一种。研究种族本质论的发展对于了解儿童的种族认知具有重要意义。种族本质论者认为,种族具有遗传不变性、有较强的归纳强度和标签具有客观性等特征。但是,基于不同特征的种族本质论的发展存在差异。类属语言、社会文化背景和群体地位,均可能影响儿童种族本质论的发展。这些影响因素提示,可通过减少类属语言的描述和促进民族融合等方式改变儿童的种族本质论。比较儿童对种族本质论的建构与自然世界的建构之间的差异,方便我们探索类别学习跨领域的一致性问题。如何确保种族本质论的发展是适宜的,这需要未来开展一些干预性的研究。