An educational program to overcome language and cultural barriers to genetic services

Providing genetic services to families who do not speak English and whose cultures are quite diverse presents a unique challenge to genetic specialists. One approach that is being employed successfully is the use of specially trained genetic assistants to provide outreach, case finding, referral, support, interpretation, advocacy, and follow-up counseling. A basic genetic assistant training program for five bicultural/bilingual Southeast Asian case managers is described. The course syllabus can be used to train health workers who represent a variety of cultures and languages.     

Attitudes toward maternal serum screening in Chinese women with positive results

Maternal serum screening for fetal Down syndrome has been integrated into routine antenatal care in most clinics in Taiwan. We examined the attitudes toward serum screening and the possible implications in women with positive results. From January to July 1995, 276 women were referred to the Genetic Counseling Clinic, Mackay Memorial Hospital for amniocentesis because of positive screening results, and 214 participated in this study. All women opted for amniocentesis after genetic counseling. Over 40% stated that they made decisions independently after being informed of the serum screening. Need for certainty was the most frequently mentioned reason. Two-thirds believed that serum screening could provide a diagnosis. Almost all women would apply for maternal serum screening for future pregnancies. This study demonstrated that Chinese women need more counseling and autonomy regarding maternal serum screening.     

Genetic Counseling Practices in Germany: A Comparison Between East German and West German Geneticists

As part of an international study of ethics and genetics, we present a comparison between survey responses of 43 East German and 212 West German geneticists to anonymous questionnaires. Both groups indicated that the experience of the Third Reich has impacted the genetics profession in Germany today. East German geneticists reported more directive counseling practices after prenatal diagnosis for 10 of 26 conditions than those from West Germany. When asked to give their personal opinions about pregnancy termination, East Germans were more accepting of abortion than their West German colleagues for 7 of 24 fetal indications. In addition, there were significant differences between the two sample groups for 8 questions on the perception of disability and society. Discussions with German geneticists suggest that, while both groups were affected by Germany's experience of Nazism, different abortion laws, political systems, and ideas about the doctor-patient relationship in former East and West Germany may account for discrepancies in reported genetic counseling practices and in attitudes toward abortion and disability.     

Psychological Aspects of Genetic Counseling. X. Advanced Counseling Techniques

Four procedures commonly used by experienced counselors are described: simple interview formulations, helping clients think through their problems, reframing, and role playing. Each procedure is illustrated by examples. Among other things, the goal of these procedures is to promote the autonomy and self-directedness of clients and thus are particularly valuable in circumstances requiring a nondirective stance. The need is underscored for a more active counseling stance appropriate to the psychological and problem-solving needs of genetic counselees.     

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。