The therapeutic misconception,beneficence, and respect

In order to provide benefits to society, human medical trials must place subjects at risk of harm. This activity is thought to be justified in part by the consent of the subjects involved. But, studies have shown that most such consents are based on a therapeutic misconception (TM); the false belief of subjects that their researchers will act as their personal physicians (seeking their benefit and protecting them from harm), rather than placing them at risk of harm for the good of others. Toleration by researchers of the TM in their subjects is a form of “informational manipulation”; that renders consent procedures disrespectful to subject autonomy. Consent obtained from subjects who labor under a TM is neither voluntary nor informed; as long as they have not been disabused of the TM, the action they take in enrolling in a trial is not the one they intend nor is it autonomously chosen. Changes in consent procedures should be adopted to ensure that all subjects are aware inter alia that (a) the health interests of future patients (as well as the researchers’ and their sponsors’ financial interests) may be more important to researchers than the interest of a subject in his or her health, and (b) normal subjects neither understand nor believe this when told. Close attention to the response of prospective subjects to this information should allow for the exclusion of all but the truly altruistic. However, the result of conscientious implementation of such policies would likely be that human medical research could no longer be conducted on more than a minimal level.     

The Therapeutic Misconception: A Threat to Valid Parental Consent for Pediatric Neuroimaging Research

Neuroimaging research has brought major advances to child health and well-being. However, because of the vulnerabilities associated with neurological and developmental conditions, the parental need for hope, and the expectation of parents that new medical advances can benefit their child, pediatric neuroimaging research presents significant challenges to the general problem of consent in the context of research involving children. A particular challenge in this domain is created by the presence of therapeutic misconception on the part of parents and other key research stakeholders. This article reviews the concept of therapeutic misconception and its role in pediatric neuroimaging research. It argues that this misconception can compromise consent given by parents for the involvement of their children in research as healthy controls or as persons with neurological and developmental conditions. The article further contends that therapeutic misconception can undermine the research ethics review process for proposed and ongoing neuroimaging studies. Against this backdrop, the article concludes with recommendations for mitigating the effects of therapeutic misconception in pediatric neuroimaging research.     

Disclosure Issues in Neuroscience Research

Issues of disclosure arise in neuroscientific research during the informed consent process, whenever incidental findings are identified, and when study results are generated. The possibility of disclosure of incidental findings and/or research results may raise informational expectations on the part of subjects and may alter a study's risk:benefit ratio. We recommend that the informed consent process address this potential consequence of research participation, and specify the conditions under which particular types of information will be offered, the conditions under which information may not be disclosed, and any provisions for helping subjects make sense of the information to be disclosed.     

患者同意能力与民事行为能力之分离研究

医疗实践中,医方往往以民事行为能力的年龄标准来对患者同意能力进行评估,此种将民事行为能力与同意能力混同的作法应当受到质疑。事实上,患者对于特定医疗服务之同意行为并非属于民事行为,且其同意能力与民事行为能力之间更不能划上等号。将患者同意能力与民事行为能力区别开来,不但有利于医疗领域患者知情同意制度的完善,更可使患者的权利得到切实的维护,从而避免不必要的医疗纠纷。     

An intellectual history of NUD*IST and NVivo

Since the rise of qualitative computing in the mid-1980s, the field of qualitative data analysis has changed in a number of ways, which remarkably have been ignored in the methodological literature, to the detriment of the area's self-understanding. This paper provides for the record an account of the intellectual development of the two qualitative data analysis programs that I have designed, together with Lyn Richards. The theme behind the history is: (1) computing has enabled new, previously unavailable qualitative techniques; (2) some important pre-computer techniques and methods were not supported by computerization of the field, at least until recently; and hence (3) computerization encouraged some biases in qualitative techniques. I hope that this paper will act as a source for a revitalized and up-to-date debate on methods and techniques that recognizes computer use as an agent of change in the field.     

Ratings and rankings: reconsidering the structure of values and their measurement

Despite extensive discussion and analysis over the past three decades, researchers are still divided over the preferability of rating or ranking systems for measuring values. However, the debate originates from the false premise that one method must be used to the exclusion of the other. A conceptualization of the value structure that uses characteristics of both rating and ranking systems opens up theory and research to a more complex understanding of values. Data from the 1995–1997 World Values Survey demonstrate how using both rating and ranking systems can lead to distinct and equally valid conclusions about the differences in value importance among the nations of the world. This suggests that either method by itself provides an incomplete understanding of the value structure. While the potential methodological complications of using both ratings and rankings must be explored, the additional cost would be a productive investment for moving beyond the rating–ranking impasse.     

论我国实现患者知情同意权存在的问题及解决措施

随着医学伦理观念的转变和现代医学模式的逐步确立,知情同意权,作为患者的一项基本权利,越来越为人们所接受和认同。尊重患者的知情同意权将有助于防范和减少医疗纠纷的发生,改善医患关系,但是,从目前的实际情况来看,在我国要想真正实现患者的知情同意权还存在很多问题,本文试图在分析这些问题的基础上提出相应的解决措施。     

我国人体器官移植立法之思考

人体器官移植为人类医学救死扶伤带来革命性的变化。本文认真分析了我国人体器官移植立法之必要性与可行性,深入探讨了我国人体器官移植立法的基本原则:知情同意原则、人民健康第一原则、效用与公平原则、规范程序与便于操作原则、违法必究原则。进而对与人体器官移植立法相关的几个问题展开讨论。     

CLIENTS ROLE CHOICES: UNEXPLORED FACTORS IN INTERVENTION DECISIONS

The role of the client in social work interventions has not been extensively explored in the professional literature. However, the client role varies significantly in different models of care and carries vast differences in the expectations and behaviors required of clients in the process. Clients’ individual characteristics, preferences, and expectations make them better suited to some approaches than others. This paper explores the change in perspectives on consumers emerging in the field and analyzes client role factors in four intervention models. It will also discuss the “fit” between the client and the particular approach as well as implications for outcomes and evidence-based practice.     

同意的困境——基于以同意理论证成政府家长式干预的视角

在自由主义语境中,对政府家长式干预行为可行性的分析诉诸于对个人意愿真实性的探求,而同意理论作为个人意愿的有效表达方式成为家长主义者和反家长主义者论辩的重点。但是,由于同意本身所具有的局限性,使得通过诉诸于个人意愿的方式证成政府家长式干预行为的路径遭遇到了不可避免的困境。