Systemically-Based Psychotherapeutic Techniques in Genetic Counseling

The uses of systemically-based psychotherapeutic methods in genetic counseling are discussed in the context of the origin of genetic counseling, the definition of genetic counseling, and the adjustments that one must make in order to implement these methods. Selected systemic methods which can be readily incorporated into genetic counseling are presented: use of genograms to explore family attitudes and beliefs about genetic risk, communications skills, and applications of family of origin work in genetic counseling. The need for research regarding the methodology and process of genetic counseling is presented with discussion of the need for theories of practice for genetic counseling.     

On the assessment of genetic technology: Reaching ethical judgments in the light of modern technology

The “Model for Reaching Ethical Judgments in the context of Modern Technologies — the Case of Genetic Technology”, which is presented here, has arisen from the project “Ethical Criteria bearing upon Decisions taken in the field of Biotechnology”. This project has been pursued since 1991 in the Zentrum für interdisziplinäre Technikforschung (ZIT) of the Technical University of Darmstadt, with the purpose of examining decision-making in selected activities involving the production of transgenic plants that have a useful application. The model is the basis of an outline for interviews to investigate how far decisions concerning the development of such plants with genetic techniques take ethical criteria into account. It was necessary to design this new model because other models for reaching judgments of this kind were not conceptually suited for concrete application. This model represents a problem related approach and combines methodological with substantive typology. In this it differs from comparable models for reaching ethical judgments.     

Professional preparation of individuals who provide genetic counseling services

An unprecedented increase has occurred in demand for genetic counseling services during the current decade. This study examined the complex issue of who currently provides genetic counseling services and the professional preparation of these personnel. A self-administered questionnaire was mailed to 325 genetic counseling professionals in the southeastern United States who were members of the Southeast Regional Genetics Group (SERGG), National Society of Genetic Counselors, or American Society of Human Genetics States; 204 completed the questionnaire (63%). Seventy percent of respondents were female and 30% were male. Thirty percent of respondents held MD degrees; nine physicians held PhD degrees. Most physicians were male. Thirty-two percent of respondents held master's degrees in genetic counseling; five counselors held PhD degrees. Twenty-three percent of respondents were nurses; eight nurses held master's degrees. Three percent of respondents were social workers. Individuals with other degrees, such as an associate of science in medical technology and a doctoral degree in education, also provided genetic counseling. Genetic counseling typically involved a team effort, consisting mainly of physicians and genetic counselors. Most respondents reported college coursework in human genetics, supervised training, and seminar/workshop training. Thirty percent reported college coursework in counseling techniques, supervised training, and seminar/workshop training. Policy recommendations are offered concerning professional preparation of genetic counselors.     

The Role of Expectations in Effective Genetic Counseling

The goals for this investigation were to assess individuals' expectations for social support from genetic counselors, and to explore how these expectations influence perceptions of genetic counselor effectiveness. Two studies were conducted to address these goals. Results from the first study show that individuals most frequently expect genetic counselors to provide options and support following the disclosure of distressing test results, while data from the second study demonstrate that expectations play a significant role in individuals' assessment of genetic counselor effectiveness. These findings shed light on what individuals expect from genetic counselors following the disclosure of medically positive test results and inform how these expectations influence the success of genetic counseling sessions.     

合成生物学伦理问题研究态势分析

合成生物学以创造新型生物为目标,这一领域的飞速发展在给人类带来巨大福祉的同时,也陆续引发众多伦理问题。利用VOSviewer等科学计量工具对国内外合成生物学伦理领域2000年~2019年近20年的相关研究文献进行量化分析,通过对时间分布、地域分布、关键词共现、研究方向等数据的系统分析,进一步对国内外学者、专家的应用研究成果与伦理思考进行总结概括,并对合成生物学伦理问题的研究趋势提出展望,以图廓清国内外合成生物学伦理问题研究的发展态势。     

基因权的证成和体系

基因科技对人的主体性造成冲击,需要通过立法对于人的基因利益予以保障。基因具有人格性,同时也负载着经济利益。现有的权利体系无法全面涵盖基因上的利益关系,基因权成为一项新型权利。基因权的证成建立在基因具有道德意义的基础上,又因为其关涉人的物种尊严、人格尊严和身体尊严,并具有巨大的经济利益,而使得基因权表现为立体化多面向的权利束。基因权利体系包括基因隐私权、基因平等权、基因知情权和基因利益分享权。在我国现行权利框架下,适宜以单行法的方式完善基因权利制度。

     

Genetic and Environmental Influences on Personal and Rhythmic‐Motor‐Activity Tempo in Children: A Twin Study

In this study, we investigated the degree to which genetics and environmental factors influence the tempo and tempo stability of rhythmic motor activity in young children, using a twin study design. A total of 116 twin children, aged 4 years, were asked to strike two small clash cymbals together in a cyclical manner, in three phases. In the first phase, children were asked to maintain a comfortable personal tempo of rhythmic motor activity (spontaneous motor phase). In contrast, in the other phases, children were required to synchronize rhythmic motor activity in response to the timing of a stimulus tone, or a memorized tempo. Large additive genetic, although negligible shared environmental influences, were observed in the spontaneous motor phase. However, environmental factors were estimated in the other two phases, while the additive genetic factor was nearly zero. These results indicate that the extent of genetic and environmental influences on individual differences in rhythmic motor activity can be modulated under different situations.     

Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research

With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to building trustworthiness. Drawing on these findings, we suggest several considerations for research institutions seeking to cultivate long-term, trusting relationships with patients: (1) Address the role of history and experience on trust, (2) engage concerns about potential group harm, (3) address cultural values and communication barriers, and (4) integrate patient values and expectations into oversight and governance structures.     

冠脉介入治疗时期氯吡格雷抵抗的认识与思考——抓住本质，全面获益

急性冠脉综合征已步入药物洗脱支架进行血运重建的时期,双联抗血小板治疗是接受PCI治疗的常规手段。临床发现部分患者不能从氯吡格雷治疗中获益,存在氯吡格雷抵抗的现象。笔者就氯吡格雷抵抗的发生机制、临床意义及治疗对策进行描述,反映相关研究的趋势和方向,为未来更优化抗血小板治疗提出一种策略。     

Gene Doping and the Responsibility of Bioethicists

In this paper we will argue: (1) that scholars, regardless of their normative stand against or for genetic enhancement indeed have a moral/professional obligation to hold on to a realistic and up-to-date conception of genetic enhancement; (2) that there is an unwarranted hype surrounding the issue of genetic enhancement in general, and gene doping in particular; and (3) that this hype is, at least partly, created due to a simplistic and reductionist conception of genetics often adopted by bioethicists.