五个层面的挑战与三大理论难题——试论基因伦理

基因伦理的挑战在基因-检测、基因-治疗、基因-生殖、基因-克隆、基因-生态等五个层面展开,大致包括保护基因隐私、防止基因歧视,生殖细胞能否基因治疗,辅助生殖是否“扮演上帝”,克隆人,转基因的安全性等内容。同时,提出了基因决定论、实体论和主观论以及基因伦理走向何处等理论难题,需要认真研究和讨论。     

ISLAM AND BIOETHICS

Muslim theologians, jurists, and healthcare workers have been addressing the challenges of modern biotechnology for years. Major textbooks on religion and bioethics cover Islam in one or two articles, offering only a general introduction to these important discussions. The five articles in this issue of the Journal of Religious Ethics, originating from a conference at Pennsylvania State University, are unusual in the specificity of their topics—brain death, feeding tubes, sex selection, spiritual counseling, and organ transplantation—and in their engagement with complex discussions in the Muslim and non‐Muslim worlds. In this essay, I introduce the five articles and consider two larger implications: the changing definition of the human person in light of biotechnological advances and the continuing importance of religious traditions, especially Islam, in legitimizing ethical responses to these advances.     

关于进化论的生命科学质疑

现代科学远未弄清楚生命是什么,所以,肯定生命是偶然生成的观点是不符合时代的科学精神的。遗传变异不能产生新的物种,也没有证据表明基因突变导致生物进化产生了新物种。按照小群突变的新达尔文主义来推断人类进化,既缺乏事实根据,也有悖于逻辑推理。     

Genetic and environmental sources of continuity and change in teacher‐rated aggression during early adolescence

Genetic and environmental sources of continuity and change in aggression were studied in a sample of 1,041 twin pairs (364 monozygotic; 348 same‐sex dizygotic; and 329 opposite‐sex dizygotic) as part of an ongoing, population‐based Finnish twin‐family study. At ages 12 and 14, the twins' aggression was assessed by their classroom teachers, using a rating form of the Multidimensional Peer Nomination Inventory. Genetic and environmental sources of continuity and change were studied by fitting a longitudinal bivariate Cholesky decomposition model. Longitudinal model‐fitting results indicated that both genetic and environmental factors influenced continuity in aggression during this 2‐year period, but the age‐to‐age correlation of these factors differed by sex. Continuity in boys' aggression was mediated by genes and common environmental factors; in girls, in contrast, continuity was due primarily to common environmental, and to a lesser degree, unique environmental factors. Genes and unique environments contributed to change in aggression in both sexes. Aggr. Behav. 31:1–13, 2006. © 2006 Wiley‐Liss, Inc.     

Social anxiety disorder in children and youth: A research update on aetiological factors

Social Anxiety Disorder (SAD) is a heterogeneous and distressing problem for many children and youth. This review focuses on the etiology and maintenance of SAD, and examines research findings in several key areas of investigation: genetic or hereditary factors (twin and family studies), temperament characteristics (behavioural inhibition), and parent–child interactions (attachment, parenting styles). It is concluded that genetic influences, behavioural inhibition, and parent–child interactions play significant and interactive roles in the development and maintenance of SAD. Other influences such as peer relationships, social skills deficits, and traumatic experiences are also acknowledged. Ultimately, an understanding of such pathways should facilitate effective early screening and intervention of children at risk for severe social anxiety.     

Code of Ethics of the National Society of Genetic Counselors: Explication of Revisions

The Code of Ethics (COE) of the National Society of Genetic Counselors (NSGC) was adopted in 1992. In 2004, the NSGC leadership appointed the Code of Ethics Work Group (COEWG) to consider revisions to the NSGC COE based on advice from the NSGC legal counsel, and to consider additional changes given growth in the scope of genetic counseling practice since the adoption of the original COE. After input from the NSGC membership, changes to the COE addressing the recommendations of the NSGC legal counsel were approved in December 2004. The COEWG then reviewed ethical codes and codes of professional conduct from 22 professional organizations, deemed to have similar goals and philosophies to the NSGC, searching for themes that encompassed genetic counseling practice that might not yet be addressed in the NSGC COE. Additional revisions to the COE were proposed, and after feedback from the NSGC membership, the revised COE was approved in January 2006 by majority vote of full members of the NSGC. The explications for the 2004 and 2006 revisions are presented.     

Molecular Genetic Studies of Eating Disorders: Current Status and Future Directions

ABSTRACT— We review association studies that have examined the genetic basis of eating disorders. Overall, findings suggest that serotonin, brain-derived neurotrophic factor, and estrogen genes may be important for the development of the disorders. These neuronal systems influence behavioral and personality characteristics (e.g., anxiety, food intake) that are disrupted in eating disorders. Future studies would benefit from larger sample sizes and inclusion of behavioral and personality covariates in analyses. Consideration of the mechanisms of genetic effects and interactions between genes and environment is also needed to extend conceptualizations of the genetic basis of these disorders.     

When You Care Enough to Do Your Very Best: Genetic Counselor Experiences of Compassion Fatigue

Compassion fatigue is a phenomenon that occurs when a caregiver feels overwhelmed by repeated empathic engagement with distressed clients (Figley, 2002). Research demonstrates its existence among nurses, physicians, and mental health professionals, but to date no published study has specifically investigated the nature and prevalence of compassion fatigue among genetic counselors. The present study was an initial attempt to identify and describe the phenomena in genetic counseling by conducting focus group interviews with 12 genetic counselors. Data analysis yielded several themes: a) compassion fatigue occurs and may compromise professional and personal functioning; b) prevalent triggers include delivering bad news and difficult patient issues (e.g., terminal illness, anger, psychopathology); c) effective coping strategies include consulting with colleagues, setting boundaries, and humor; and d) risk factors include personality characteristics and traumatic memories. Training, practice, and research recommendations are provided.     

Results of an Intervention for Individuals and Families with <Emphasis Type="Italic">BRCA</Emphasis> Mutations: A Model for Providing Medical Updates and Psychosocial Support Following Genetic Testing

Providing medical management updates and long-term support to families with hereditary cancer syndromes in rural areas is a challenge. To address this, we designed a one-day retreat for BRCA1/2 carriers in our region. The retreat included educational updates about medical management, genetic privacy and discrimination, and addressed psychological and family issues. Evaluations completed at the conclusion of the retreat were overwhelmingly positive with requests for a similar event in the future. The impact of this retreat on a variety of health behaviors was assessed. Eligible participants completed questionnaires before and 6 months after the retreat. Questionnaires focused on lifestyle, cancer screening and prevention practices, psychological history and distress, decision-making regarding genetic testing, and family communication issues. For individuals who completed both the pre and post retreat questionnaires, one-half made lifestyle changes and nearly two-thirds increased cancer screening, initiated chemoprevention, completed or planned to complete preventative surgery in the future. We conclude that this type of forum provides a valuable opportunity for BRCA carriers and their families to receive updated medical information, share personal experiences, provide and receive support, as well as change health behaviors.     

Clinical Characterization and Risk Profile of Individuals Seeking Genetic Counseling for Hereditary Breast Cancer in Brazil

Hereditary breast cancer (HBC) accounts for 5–10% of breast cancer cases and it significantly increases the lifetime risk of cancer. Our objective was to evaluate the sociodemographic variables, family history of cancer, breast cancer (BC) screening practices and the risk profile of cancer affected or asymptomatic at-risk women that undergo genetic counseling for hereditary breast cancer in public Brazilian cancer genetics services. Estimated lifetime risk of BC was calculated for asymptomatic women using the Gail and Claus models. The majority of women showed a moderate lifetime risk of developing BC, with an average risk of 19.7% and 19.9% by the Gail and Claus models, respectively. The average prior probability of carrying a BRCA1/2 gene mutation was 16.7% and overall only 32% fulfilled criteria for a hereditary breast cancer syndrome as assessed by family history. We conclude that a significant number of individuals at high-risk for HBC syndromes may not have access to the benefits of cancer genetic counseling in these centers. Contributing factors may include insufficient training of healthcare professionals, disinformation of cancer patients; difficult access to genetic testing and/or resistance in seeking such services. The identification and understanding of these barriers is essential to develop specific strategies to effectively achieve cancer risk reduction in this and other countries were clinical cancer genetics is not yet fully established.