基因研究中的知情同意之惑

知情同意作为生命伦理的重要原则,在基因研究中同样占据重要的地位,由于基因研究中知情同意的异质性,在基因研究中面临着诸如如何理解其知情同意的异质性、群体知情同意、基因知情与基因隐私、利益冲突等问题.通过分析基因研究中知情同意的特殊性,综合国内外此领域的已有研究,运用理论联系实际的方法,得出结论认为,只有正确区分基因知情与基因隐私的权利主体,用伦理规范来解决利益冲突,在发展中不断完善知情同意,才能够取得科技与伦理的共赢.     

The structure of “communities” and communications in the new millennium

The three lineages of information,—the genetic, the cultural and artifactual—will increasingly merge their constituent information contents through advances in biotechnology and information technology. This will redefine what constitutes “social” and what constitutes “community.” A community's members communicate with their “significant others” and change their internal information states (and their internal and external behaviors). Under conditions of merging, information exchanges occur across all the three lineages. In this sense, the concept of significant other,—that is, a communicating entity—, is now spread from human communities to encompass also the biological and the artifactual. A seamless merging between the three realms now occurs affecting their respective internal information stores. The resulting image of interactions that now arises is of multiple oceans of communities, operating at different levels, the genetic, the cultural and the artifactual. There are exchanges across the different levels, up and down and sideways, as information is translated from one realm to the other. These dynamics result in changes in the evolutionary characteristics of each lineage and sub‐lineage, including the internal perceptions from within a lineage, namely in the language of evolutionary epistemology, its “meanings” and “hypotheses” on the world. A future sociology must necessarily take into account these factors and incorporate the dynamics of all three realms.     

The Theory Of Social–Cultural Genetic Gene (S- c Dna)

It took a long time for humanity to know about biogenetics. And yet its role as a determinant in the living system was not proven until the twentieth century when DNA was discovered. Similarly, it took a long time for humanity to know about culture and civilization. And yet until now there is neither definite standards for differentiating them nor a definition that is commonly acceptable. By taking an evolutionary pluralism as ontology framework and the transdisciplinary research method of the systems science, we have in the new social system model discovered the central rules that govern the social–cultural heredity: Culture–Production–Civilization. The relationship between culture and civilization is exactly that of genotype and phenotype. Culture is the S-cDNA within the social system while civilization is the social phenotype. Culture is a determinant that ultimately determines the existence, stagnation, change, and evolution of the social system.     

Big Gods and other watcher mechanisms in the formation of large groups

Norenzayan's effort to integrate genetic and cultural evolution is a welcome advance over previous efforts, as is the attention he devotes to different levels of analysis from cognitive mechanisms to large group interactions. The scope of Norenzayan's argument, however, is bound to leave many scholars of religion feeling uneasy. The content of his model, which is most likely over specified, will need further testing in light of historical evidence. Comparison of Big Gods with Robert Bellah's Religion in Human Evolution (2011) highlights some of the choices Norenzayan made in designing his model and suggests ways it could be elaborated. Historians of religion who would like to help test his model could keep an eye out for ‘watcher mechanisms’ that might play more of a role than ‘moralizing Big Gods’ in some traditions and, thus, potentially offer an alternative route to large, anonymous, yet stable groups.     

Risk perceptions,worry, and attitudes about genetic testing for breast cancer susceptibility

This study assessed the unique associations of risk perceptions and worry with attitudes about genetic testing for breast cancer susceptibility. Women (general practitioner clinic attenders, university students, and first-degree relatives of breast cancer survivors; N?=?303) read information about genetic testing and completed measures assessing perceived cancer risk, cancer worry, and genetic testing attitudes and beliefs. Worry was associated with greater interest in genetic testing, stronger beliefs that testing has detrimental emotional consequences, and positive beliefs about benefits of testing and risk-reducing surgeries. Perceived risk was unrelated to interest and associated with more skeptical beliefs about emotional consequences and benefits of testing and risk-reducing surgeries. At low worry levels, testing interest increased with more positive beliefs about testing benefits; at high worry levels, interest was high regardless of benefits beliefs. The findings support Leventhal's Common-Sense Model of self-regulation delineating interactive influences of risk-related cognitions and emotions on information processing and behavior.     

Living with Hereditary Haemorrhagic Telangiectasia: stigma,coping with unpredictable symptoms,and self-advocacy

Abstract

Objective: Hereditary Haemorrhagic Telangiectasia (HHT) is a genetic condition causing frequent nose bleeds, skin lesions (telangiectasia) and arteriovenous malformations. Approximately, 50% of people experience life-threatening HHT symptoms including haemorrhages in the brain, lungs and liver. This study aimed to gain a qualitative understanding of the psychosocial impact of HHT over time. Design: Using a phenomenological framework, a rigorous narrative analysis was performed on 20 semi-structured interviews with individuals with HHT aged 20s–60s. Main outcome measures: Qualitative themes explaining life experiences prior to and following a clinical diagnosis of HHT. Results: Narratives highlighted four psychosocial themes: (i) the psychological impact of visible symptoms was significant and related to experiences of social stigma, (ii) individuals struggled to identify triggers of symptoms in order to reduce unpredictability, (iii) an illness identity was rejected by minimising HHT when talking about the present self, and by positive reframing as ‘lucky’ and (iv) self-advocacy was necessitated due to lack of expert coordinated care. Conclusion: HHT has a demanding impact on social, physical and psychological well-being. These findings have significant implications for health care, as narratives about interactions with health professionals often used the terms ‘frustrating’ and ‘not being heard’.     

Predictors of interest in direct-to-consumer genetic testing

Direct-to-consumer (DTC) genetic testing is an increasingly available option among individuals searching for information about their health risk factors and ancestry. This study is one of the first to examine predictors of interest in DTC genetic testing. Participants read one of the three types of information about DTC genetic testing (positive only, negative only or both) and reported perceptions of and intentions to pursue testing. The information which people read, their perceptions of the benefits of testing, their perceptions of the barriers to testing and anticipated regret predicted intentions to undergo testing. Interestingly, people who read both positive and negative information did not differ from people who read only negative information in their intentions to pursue testing. We discuss the implications of these findings for predicting interest in this relatively new type of genetic testing and for designing interventions to encourage (or discourage) testing.     

Juggling roles and expectations: dilemmas faced by women talking to relatives about cancer and genetic testing

Health professionals do not inform their patients’ kin about BRCA1/2 test results or genetic testing without their written consent. Thus, the onus is on women attending genetic counselling to talk to relatives about the family history and their potential increased risk. This communication process within the family is largely unexplored and provides the focus of the present study. Fifteen healthy women attending a genetics clinic for predictive testing were interviewed prior to receiving their test result and again 6 months later. A grounded theory approach was used. Findings illustrate the dilemmas women faced in juggling social roles and expectations, which had an impact on communication within the family in the context of predictive genetic testing. Tensions between responsibilities towards themselves and others and their fulfilment of social roles had an impact on who women informed and on how they did so. These factors should be considered when assigning patients the role of information provider.     

Thirty Years Later: An Oncologist Reflects on Kubler-Ross's Work

As compared with conventional vaccine production systems, plant-made vaccines (PMVs) are said to enjoy a range of advantages including cost of production and ease of storage for distribution in developing countries. In this article, we introduce the science of PMV production, and address ethical issues associated with development and clinical testing of PMVs within three interrelated domains: PMVs as transgenic plants; PMVs as clinical research materials; and PMVs as agents of global health. We present three conclusions: first, while many of the ethical issues raised by PMVs are familiar, PMVs add a new dimension to old issues, and raise some novel issues for ethicists and policy-makers; secondly, it is premature to promise broad applicability of PMVs across the developing world without having demonstrated their feasibility; thirdly, in particular, proponents of PMVs as a solution to global health problems must, as a condition of the ethical conduct of their research, define the commercial feasibility of PMVs for distribution in the developing world.     

伤害回避的脑机制及其生物基础

伤害回避是指个体对厌恶刺激信号做出强烈的反应,并学会被动地回避惩罚的一种倾向,这一倾向使得个体反复思考未来的结局,并谨慎小心地对待不确定情景中的事件,进而更有可能诱发情感障碍。伤害回避涉及的神经网络包括三个子网络,即额顶叶-前扣带皮层的连接、皮层-杏仁核的连接和白质通道的结构性连接,这三个子网络分别与羞怯感-易疲劳性、预期担心以及不确定环境中的害怕情绪有关。而其生物基础则包括单一基因多态性和基因多态间的交互作用。今后的研究应该集中在深化伤害回避神经网络与生物基础间的联合机制、研究三种及以上基因多态间的交互作用、考察其他因素对基因效应的调节作用、注重伤害回避四种亚型相关神经网络之间的连接、探讨5-HT4等其他几种5-羟色胺受体多态性与伤害回避的关系以及分析伤害回避内部机制在抗抑郁治疗中的作用等方面。