DTC基因检测的伦理思考

直接面向消费者提供基因检测服务称为Direct-to-Consumer (DTC)基因检测.随着人类基因组计划测序工作的完成,DTC基因检测服务行业逐渐发展起来,它的出现与人们日益提高的健康需要相适应.但与此同时,一些社会伦理和法律问题也随之产生.对DTC基因检测的现状以及各国对其认可度进行阐述,剖析DTC基因检测存在的伦理问题,如隐私问题,有限的预测价值,检测信息的准确性,检测结果对受试者造成的负面心理影响,以及由此产生的基因歧视和卫生保健资源的浪费等.     

DTC基因检测的伦理思考

直接面向消费者提供基因检测服务称为Direct-to-Consumer(DTC)基因检测。随着人类基因组计划测序工作的完成,DTC基因检测服务行业逐渐发展起来,它的出现与人们日益提高的健康需要相适应。但与此同时,一些社会伦理和法律问题也随之产生。对DTC基因检测的现状以及各国对其认可度进行阐述,剖析DTC基因检测存在的伦理问题,如隐私问题,有限的预测价值,检测信息的准确性,检测结果对受试者造成的负面心理影响,以及由此产生的基因歧视和卫生保健资源的浪费等。     

基因检测与治疗中若干问题的伦理学思考

随着基因组学的发展,临床医学中出现了基因检测与基因治疗的新方法,伴随着基因技术的临床应用出现了一些伦理、法律和社会新问题,迫使人们从理论和观念层次加以考察并探讨解决问题的可能性途径,对基因检测和基因治疗中出现或可能出现的伦理学问题进行了初步探讨,结合国际人类基因组计划的有关规范,探索了解决问题的可能性途径。     

基因专利保护的伦理审视

基因专利与普通专利不同,需要兼顾资源提供者的利益.当前,基因专利保护中出现的诸多问题背离了尊重、公正、有利的普遍伦理原则.基因专利需要接受伦理的考量,道德规范是消解基因专利冲突的理性选择.     

中国临床遗传学检测的伦理问题

遗传伦理问题是生命科学领域最具争议的问题之一.针对基因诊断的"知情权"、"优劣"胎儿的选择、基于人群的基因筛查、发病前及患病风险的基因检查、全基因组筛查以及植入前遗传诊断中所涉及的伦理前沿问题进行讨论.提出基因检测是否应该重申把伦理考虑放在第一位.     

中国临床遗传学检测的伦理问题

遗传伦理问题是生命科学领域最具争议的问题之一。针对基因诊断的"知情权"、"优劣"胎儿的选择、基于人群的基因筛查、发病前及患病风险的基因检查、全基因组筛查以及植入前遗传诊断中所涉及的伦理前沿问题进行讨论。提出基因检测是否应该重申把伦理考虑放在第一位。     

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.     

从基因编辑婴儿看基因优生学的伦理辩护与疑虑

基因编辑婴儿事件在全球引起轩然大波,引发各界对于研究伦理及可能引发之伦理疑虑的广大讨论。首先从优生学到基因优生学进行了分析,然后就基因干预的道德界线和基因优生学的道德疑虑进行探讨和思考,最后针对基因编辑完美婴儿所涉及的伦理问题,从儒家生命伦理学的"参赞天道原则""有限度的基因干预"观点做出相应的回应。最后指出基因编辑婴儿事件若干不符国际伦理规范的要点。     

在华跨国公司伦理危机及其解决途径

在华跨国公司伦理失范问题有多方面的原因,其根本原因是跨文化伦理的冲突.不同伦理规范的存在,使得企业在跨国经营活动中难免会出现伦理冲突,并出现伦理秩序混乱的情况.解决这一问题,需要在华跨国公司强化企业的伦理秩序建设,包括企业价值决策理念的确认、企业制度的完善及人力资源管理等.     

美国对受试者研究中特殊挑战的观点:遗传研究中的伦理问题

虽然基因研究比其他任何时候更有望了解人类疾病及其在世界各类人群中的表现形式,并且对预防和治疗疾病产生了深远影响,但是它的应用也会极大地改变我们对个体及群体特征。从个体属性及群体意识的角度来看,特别是关于知情同意这个议题,我们会非常清楚地看到遗传研究所面临的挑战。阐述了在美国遗传研究所面临的挑战,讨论了遗传研究进行过程中出现的一系列伦理问题,如：如何正确执行知情同意;研究中可能对受试者产生的标签和歧视行为;遗传流行病研究中出现的伦理问题以及需要关注的社区和民族的伦理问题;对人类组织样本的储存和使用中所出现的伦理问题。强调了知情同意和社区参与遗传研究及在研究中社区代表性的重要性;强烈主张在遗传研究中建立多民族的合作是确保研究的顺利进行的基础。     

Genetics and the Interpersonal Elaboration of Ethics

Confidentiality in genetic testing posesimportant ethical challenges to the currentprimacy of respect for autonomy and patientchoice in health care. It also presents achallenge to approaches to decision-makingemphasising the ethical importance of theconsequences of health care decisions. In thispaper a case is described in which respect forconfidentiality calls both for disclosure andnon-disclosure, and in which respect forpatient autonomy and the demand to avoidcausing harm each appear to call both fortesting without consent, and testing only withconsent. This creates problems not only forclinicians, families and patients, but also forthose who propose clinical bioethics as a toolfor the resolution of such dilemmas.In this paper I propose some practical waysin which ethical issues in clinical geneticsand elsewhere, might be addressed. Inparticular I call for a closer relationshipbetween ethics and communication in health caredecision-making and describe an approach to theethics consultation that places particularemphasis on the value of interpersonaldeliberation in the search for moralunderstanding. I reach these conclusionsthrough an analysis of the concept of `moraldevelopment' in which I argue that theachievement of moral understanding is anecessarily intersubjective project elaboratedby moral persons.     

Modern Advances in Genetic Testing: Ethical Challenges and Training Implications for Current and Future Psychologists

The ethical implications for psychological practice of genetic testing are largely unexplored. Predictive testing can have a significant impact on health and well-being, and increasing numbers of individuals with knowledge of their risk for various disorders are likely to present for psychotherapy. In addition, more people will struggle with the decision of whether to obtain information regarding their genetic material. Psychologists will need to have the appropriate knowledge and clinical skills to effectively counsel this population. This article highlights the relevant ethical issues surrounding psychological treatment of individuals pursuing or considering undergoing genetic testing. These issues are extended to psychologists working in research, education, and policy domains. Recommendations for graduate training programs to facilitate current and future practitioner competence are also discussed.     

The Amish: Perceptions of genetic disorders and services

Previous studies of the closed Amish population have proven to be valuable in the field of genetics, however they have not explored the Amish parents' opinions and attitudes concerning genetic conditions and services. This exploration is necessary in order to provide culturally sensitive health care to a population at an increased risk for certain genetic conditions. The purpose of the present study was to examine the Amish population's general knowledge of genetic disorders, services, and the terminology used in describing inherited conditions, as well as their attitudes toward medical care and ethical and reproductive issues. Information was obtained from 17 Amish families, 12 who had an incidence of a genetic condition and five who had one or more children with other special health care needs, during personal interviews conducted in their homes in Lancaster, Pennsylvania. Results of the interviews showed that the birth of an affected child did not deter subsequent reproduction, that the majority of the parents were never offered genetic counseling or prenatal testing, and that the parents are interested in understanding the cause of their children's problems and recurrence risks.     

Policy Recommendations for Carrier Testing and Predictive Testing in Childhood: A Distinction That Makes a Real Difference

The genetic testing of children raises many ethical concerns. This paper examines how five position statements from Canada, UK and USA, which present guidelines for good practice in this area produce different recommendations for carrier testing and predictive testing. We find that the genetic information generated through carrier testing is routinely presented as less serious than that generated from predictive testing. Additionally, the reproductive implications of predictive testing are also routinely erased. Consequently, the papers argue strongly against predictive testing but advise caution against carrier testing in somewhat weaker terms. We argue that these differences rest on assumptions about the status of reproduction in people’s lives and on an ethical stance that foregrounds the self over others. We propose that questioning the crude and sharp distinction between carrier and predictive testing in principle may enable practitioners and parents/families to make more nuanced decisions in practice. Parts of this work have been presented in the 1st International CESAGen Conference, London, 2004, and Genetics and Society Meetings, Wales.     

The use of genetic test information in insurance: The argument from indistinguishability reconsidered

In the bioethical literature, discrimination in insurance on the basis of genetic risk factors detected by genetic testing has been defended and opposed on various ethical grounds. One important argument in favour of the practice is offered by those who believe that it is not possible to distinguish between genetic and non-genetic information, at least not for practical policy purposes such as insurance decision-making. According to the argument from indistinguishability, the use of genetic test information for insurance purposes should be permitted, because genetic test information is no different from non-genetic medical information in any relevant respect, therefore it would be inconsistent to prohibit the former whilst permitting the latter. This paper discusses and defends this argument and suggests a new, more tenable foundation.     

Ethical issues in genetic counseling: A comparison of M.S. counselor and medical geneticist perspectives

New technologies available in the field of medical genetics have increased the importance of responsible ethical decision-making among genetic counselors. A 1985 national survey of M.D. and Ph.D. genetic counselors assessed ethical attitudes using case scenarios designed to simulate dilemmas faced in genetic counseling (Wertz and Fletcher, 1988b). The current study focuses on attitudes of M.S. genetic counselors using similar scenarios, allowing for effective comparisons. M.S. counselors were more willing than M.D. and Ph.D. counselors to maintain patient confidentiality when screening for Huntington's Disease and occupational diseases, and a greater number would agree to counsel patients pursuing prenatal testing for sex selection. A majority of M.S. counselors would disclose an XY karyotype to a phenotypically female patient. M.S. counselors reasoned that respect for patient autonomy and patient confidentiality justified their decisions in many cases. The importance of these principles is discussed and questioned.     

Genetic counseling for the next 25 years: Models for the future

Currently, two trends pose particular challenges for genetic counseling: (1) spin offs from the Human Genome Project leading to new diagnostic genetic tests far in advance of any cures; and (2) an increasing and diversified client population. These trends will lead to changes in both genetic service delivery systems and the development of alternative models of the genetic counseling process itself. Two models that could be adapted for genetic counseling are: the mutual participation model and the life history narrative model. Technological advances present ethical dilemmas and raise many questions. Already, improved detection of genes for predisposing conditions has entered clinical medicine requiring renewed ethical appraisals of genetic testing. Integration of genetic counseling (and required pre-screening education) into primary care settings involves time constraints and the involvement of health care personnel with less training in genetics. Alternative approaches are beginning to be discussed. Innovative genetic counselors with expanded visions of counseling goals and practices will play an increasingly important role in the future of genetic counseling.     

论遗传咨询和保健服务的科技保障与伦理优先

就遗传咨询服务及相关保健服务过程中涉及到的科技保障与伦理优先的问题进行了讨论。对在遗传咨询服务和产前诊断技术服务中的有关伦理问题提出了一些见解。认为,科技保障是遗传咨询和相关保健服务的基础,而伦理优先则是传咨询和相关保健服务的道德规范。只有在符合道德规范前提下的技术服务,才是真正科学的技术服务。     

Genetic Counseling and the Ethical Issues Around Direct to Consumer Genetic Testing

Over the last several years, direct to consumer(DTC) genetic testing has received increasing attention in the public, healthcare and academic realms. DTC genetic testing companies face considerable criticism and scepticism,particularly from the medical and genetic counseling community. This raises the question of what specific aspects of DTC genetic testing provoke concerns, and conversely,promises, for genetic counselors. This paper addresses this question by exploring DTC genetic testing through an ethic allens. By considering the fundamental ethical approaches influencing genetic counseling (the ethic of care and principle-based ethics) we highlight the specific ethical concerns raised by DTC genetic testing companies. Ultimately,when considering the ethics of DTC testing in a genetic counseling context, we should think of it as a balancing act. We need careful and detailed consideration of the risks and troubling aspects of such testing, as well as the potentially beneficial direct and indirect impacts of the increased availability of DTC genetic testing. As a result it is essential that genetic counselors stay informed and involved in the ongoing debate about DTC genetic testing and DTC companies. Doing so will ensure that the ethical theories and principles fundamental to the profession of genetic counseling are promoted not just in traditional counseling sessions,but also on a broader level. Ultimately this will help ensure that the public enjoys the benefits of an increasingly genetic based healthcare system.