scholarly journals 知情同意的若干問題

Author(s):  
Xiaomei ZHAI

LANGUAGE NOTE | Document text in Chinese; abstract also in English.作為一種法律學說,知情同意在西方社會已經存在多年,並且得到長足的發展。這一學說來源於《紐倫堡法典》。知情同意不僅僅是“法律文件”,也不是醫患“共同決策",它是具有豐當倫理內涵的一個概念,是一個人實際理解並且真正在沒有他人控制下有意地批准和同意專業人員做某事。中國具有其獨特的文化傳統背景和經濟發展水平,西方國家基於自主的和權利的理論、信念以及方法在中國基於義務的和強調集體的傳統文化中尚缺乏一定的根基。中國文化傳統上的倫理決策是基於義務而不是基於權�的。這種根深蒂岡的傳統所肯定的是社會或者整體的利益,容易忽視的是個人應享有的權利。在中國文化傳統中,家庭和社區具有很強的凝聚力,家庭或社區協助和支持下的知情同意往往建立在更加充分的理解、思考基礎之上。這種知情同意獲得的方式很有價值:更加精緻,更加體現了尊重人的倫理學原則。但是需要注意的是,這種協助不能完全超越自我決定性。另外,社區的“允許”並不等同於個人的“同意”,而且社區的允許也不應該取代個人的同意。另外,目前在中國,臨床藥理試驗,倫理審查委員會(IRBs)制度化,合理的補償與不正當的引誘的區別,基因研究中的知情同意問題以及利益衝突等很多現實問題都需要引起倫理學的關注,並進行大量的研究工作。In Western societies, the idea of informed consent as a legal account has long been there and developed significantly. This idea originated from the "uremberg Code". In fact, informed consent is neither a mere "legal document" nor a "common decision" made by the physician and the patient. It is a concept rich in moral content. It is about how an individual perceives and intentionally (without being controlled by others) agrees and allows professionals to carry out certain actions on him/her.China has a unique traditional cultural background and economic development level. Due to the emphasis on responsibility and collectiveness in Chinese cultural traditions, introducing the Western theory, beliefs, and practice based upon individual autonomy and rights to Chinese society does not have solid foundation. According to Chinese cultural traditions, people consider responsibility instead of rights during making ethical decisions. These deeply-rooted traditions assure the interests of the whole and tend to neglect the rights of the individual. Chinese families and communities have a very strong sense of cohesiveness. With the assistance and support of the family or community, the thinking and understanding of informed consent can be established on a more adequate and solid foundation. This kind of way to get informed consent is very valuable: it is more accurate and can also fulfills the ethical principle of respect. However, the assistance of the family or community should not override individual's autonomy in making decisions. Moreover, community "permission" is not equal to individual "consent". Indeed, it should not replace individual "consent".Contemporary China faces many practical problems, such as clinical medicine testing, establishing Institutional Review Broads (IRBs), differences between reasonable compensation and improper reward, conflict of interests in genetic research as well as the practice of informed consent. They demand ethical attention and a large amount of careful research.DOWNLOAD HISTORY | This article has been downloaded 13 times in Digital Commons before migrating into this platform.

Author(s):  
Jin-cheng LEI ◽  
Zhi-qing XIE

LANGUAGE NOTE | Document text in Chinese; abstract also in English.在中國幾千年小農經濟和傳統文化背景下,個人利益、個人權利一直被置於家庭之下,個人自主性被包含在家庭自主性之內,表現為一種家庭本位主義。源自西方歷史、文化的知情同意移植到中國後,受傳統文化概念的影響,中國人對知情同意的認知、理解以及實踐方式均不同於西方人。這種不同集中表現在人們對家屬同意權的認可。以個人本位主義為背景的病人自主性與中國文化中的家庭本位主義之間存在張力。對知情同意在不同文化環境中不同踐行方式,應以文化寬容主義的態度對待之。不同文化背景下的倫理觀念,不僅存在差異性,而且也存在可通約性和相容性。由於種種原因,家庭同意並不能等同於病人本人的意願。隨著全球化進程的加速和人們相互交往的密切,類似知情同意這樣一些原本屬於個人的自然權利,將會愈來愈多地為各國人民接受。我們應當在某些條件具備時,盡可能地將家屬同意限制在合理的範圍,讓病人更好地表達自己的意願。Family has a long history. With China's small-scale peasant economy and traditional cultural background for centuries, family has been the most basic unit of polity, economy, and socio-cultural life. Interests and rights of the individual are always placed below those of family; individual autonomy is often included in family autonomy. All this can be called familism. There are deeper and determining economic reasons for familism. The economy of the family is controlled by the head of the family or clan so that the individual usually has no independent economic measures to support his or her autonomous rights.Informed consent originated in the Western culture. The theoretical premise of informed consent is respect for the patient's autonomy. The patient's autonomy is closely related with individualism in the West. After informed consent is spread from the West to China, due to the influence of traditional Chinese culture, the Chinese perception, understanding, and practice of are different from those of the West. The difference mainly lies in Chinese familism. To focus on the autonomy of the family reflects the influence of traditional familism upon informed consent. As a result, there exits a tension between the patient's autonomy based on individualism and familism in Chinese culture.Informed consent is not a culture issue, but it is closely related with cultural tradition. It is impossible to get away with cultural norms in the practice of informed consent. To different practicing methods of informed consent in different cultural contexts, the spirit of cultural tolerance is needed. In China, with the principle of cultural tolerance as a practical guidance, we should establish a set of procedure and ways of practicing informed consent with Chinese characteristics. Fundamentally, informed consent is to balance the unbalanced power between doctors and patients. According to the principle of cultural tolerance, the difference in the practice of informed consent at different cultural contexts should be tolerated so long as the basic purpose of informed consent is not violated. There exists a variety of cultural ideas among contemporary Chinese. The individual patient and his or her family are essential part of informed consent, with both having their rationality. Thus, we shouldn't reject absolutely some methods. From the angle of historical development, it is worthwhile noticing the transformation from family determination to individual autonomy. National and cultural differences are integrating in the age of globalization. Since laws, ethics, and customs in different countries and cultures are mutually exchanging, we should promote to make the practice of informed consent to become similar.DOWNLOAD HISTORY | This article has been downloaded 35 times in Digital Commons before migrating into this platform.


2019 ◽  
Author(s):  
Jing Wu ◽  
Jiajia Yu ◽  
Xuchun Ye ◽  
Qing Wu ◽  
Chenling Luo

Abstract Background Informed consent (IC) is a fundamental element of modern clinical medicine based on the spirit of individual autonomy. Patients’ comprehension of the key elements of clinical IC is often poor. Aims and Objectives This study aimed to explore patients’ perceptions and expectations of IC process in invasive and surgical procedures. Design A cross-sectional descriptive study was carried out in Shanghai, China. Methods A self-administered structured questionnaire was developed to evaluate patients’ perceptions and expectations of the IC process. In total, 317 individuals were included in the final analysis. Results Majority (73.8%) of the process was undertaken one day prior to the procedure and nearly half (47.6%) lasted less than 15 minutes. Most (96.8%) patients were given verbal explanation information by healthcare professionals. The nature of illness, potential risks and complications (74.1%) and the necessity of the procedure (69.4%) were mostly memorized while alternative treatments rarely (13.6%). Patients expected their family members involved in the decision making and could be provided more time to read the IC document and prepare for the decision-making. What the patients got was significantly different from what they expected in the following aspects, such as who participated in IC, where and when it took place, how long it lasted and main contents that should be discussed in IC (P <0.05). Statistically significant relationship was found in expectations of IC patients and their income and payment type of medical expenses (P <0.05). Discussion This study explored patients’ expectation and perception of IC process regarding invasive procedures. Patients wanted to be more involved in IC process. To promote patient participation, more time should be given to the patients to comprehend and understand the IC document. In addition, information related with long-term issues should be discussed as a focal point. There is a need to re-consider IC process and to develop methods to promote the patients’ satisfaction in achieving autonomy.


2020 ◽  
Vol 147 (4) ◽  
pp. 823-837
Author(s):  
Katarzyna Sierakowska

Evolution or revolution? Transformations of family in the Polish lands in the first half of the twentieth century: Selected aspects The text focuses on select issues related to the transformation of the family in the first half of the twentieth century, such as: changes regarding marital choices and relationships between spouses, changes in the scope of parental roles and the processes of individualization and individual autonomy in the family. It tries to answer the questions about the dynamics of these processes in different social milieus and to indicate factors that accelerated and delayed them. The analysis of the sources and literature concerning family lives does not allow for an unambiguous assessment of the rapidity and range of changes taking place in families. Nevertheless, it exposes the diversity of models existing in family life and shows that it depends on such elements as social environment, gender, idiosyncratic features of the individual, to the same extent as it does on the rate of change.


2011 ◽  
Vol 60 (4) ◽  
Author(s):  
Elena Ferioli ◽  
Mario Picozzi

La richiesta di istituire biobanche oggi diventa sempre più impellente. Una biobanca è una struttura dove si raccolgono per un tempo lungo materiale biologico e dati di natura biomedica correlati al campione, che può provenire sia da pazienti che da cittadini. Da un lato si riconosce il ruolo che le biobanche possono avere sia nell’acquisire nuove conoscenze sia nel favorire nuovi trattamenti di diagnosi e cura, dall’altro è necessario riflettere sulle delicate e complesse questioni giuridiche ed etiche ad esse sottese. Il presente contributo, dopo aver fatto chiarezza sulla definizione e sui requisiti tecnici necessari per l’istituzione di una biobanca, si sofferma ad analizzare le principali questioni etico-giuridiche: a chi appartiene il tessuto e chi beneficia dei risultati ottenuti? Quale consenso informato è adeguato per protocolli sperimentali non prevedibili al momento del prelievo del tessuto? Come può essere garantita la riservatezza dei dati, anche in funzione dell’analisi genetica? Gli argomenti vengono analizzati a partire dalla letteratura internazionale, mostrando le diverse posizioni. In tema di proprietà del tessuto e di proprietà intellettuale dei risultati si evidenzia come sta emergendo una concezione solidaristica, in cui materiale e informazioni sono da considerarsi risorse a disposizione dell’intera collettività, che ne affida alla biobanca la gestione. Il modello di consenso informato che sembra prevalere è quello definito “ampliato”, di cui si evidenziano pregi e difetti, nell’ottica di un bilanciamento tra autonomia del soggetto, interesse della collettività ed esigenze della ricerca. La questione della riservatezza impone di riflettere sia sul diritto alla privacy sia sulla possibilità di utilizzo del dato per finalità di ricerca. Data la complessità delle questioni emerse, si ritiene che necessariamente la fiducia del paziente/cittadino verso la comunità scientifica giochi un ruolo fondamentale. Il Comitato di etica, a cui vanno assicurate competenze e risorse adeguate, diventa lo strumento di garanzia indispensabile per una gestione eticamente accettabile della biobanca. ---------- Today the request to create biobanks is more and more urgent. A biobank is a structure where biological specimens and related biomedical data, obtained from patients and/or citizens , are stored over time. On one hand, we acknowledge the role that biobanks may have in acquiring new knowledge and fostering new treatments for diagnosis and therapy, on the other we need to reflect upon the delicate and complex legal and ethical issues that biobanks rise. This paper, after defining the concept of biobank and the technical requirements needed to establish one, analyzes some major ethical and legal issues: Who owns the tissues and who can benefit from potential results? Which kind of informed consent is the most appropriate for experimental protocols not yet predictable at the time of tissue collection? How can data confidentiality be guaranteed also in relation to genetic analysis? The topics are analyzed with reference to the international literature, comparing different perspectives. Regarding the ownership of biological samples and the intellectual property rights of the potential research outputs based on the data, the recent literature introduces a new concept of solidarity which consider all samples and information at full disposal of the entire community and which indicates the biobank as the manager of the archive. The model of “broad” informed consent seems to prevail: we indicate its points of strength and weakness, considering a necessary balance among the individual autonomy, the collective interest and the research requirements. Finally, regarding the confidentiality of all data, we need to reflect upon the right to privacy along with the possibility to use the available data for research purpose. Considering the complexity of these issues, we believe that the patient’s trust towards the scientific community is the main matter. The Ethics Committee, to whom adequate resources and expertise must be granted, becomes the assurer entity for an ethically acceptable management of a biobank.


ICR Journal ◽  
2010 ◽  
Vol 1 (3) ◽  
pp. 532-535
Author(s):  
Alina Zvinkliene

The issues of ‘honour’ - and in particular honour-related crimes - in modern societies undisputedly need more public reflection and discussion, especially at the meeting points of different cultures. The ‘concept of honour and shame’ - although not the only factor - is very important for understanding the background of domestic violence. This applies also - although in no way exclusively - to those Muslim family structures that are based on particular cultural traditions. The division of honour into ‘true’ and ‘artificial’ honours indicates that honour can be used to legitimate the hierarchy between members of the family. From a sociological perspective, the minimalist definition refers to honour as a right to respect. This means that honour exists both subjectively and objectively. It exists subjectively as a personal feeling as being entitled to respect. However, it exists also objectively as a public recognition of the public value of the individual. Honour/dishonour-shame always has a form of publicity.


Author(s):  
Shuqing WU

LANGUAGE NOTE | Document text in Chinese; abstract also in English.本故事提出了如下一些知情同意方面的問題:面對沒有文化、且毫無醫學知識的病人,如何履行知情同意?在病情緊急情況下應否免除知情同意或待病情穩定後再向病人或家屬補充說明?如果是後者,這種事後的同意有何意義?在醫院追逐利潤並與病人利益發生衝突的情況下,費用成為病人關注的重要問題,病人如何有效的表示自己的意見?在病人本人沒有經濟能力、又無醫療保險的條件下,一切依賴家屬,病人如何維護自己的權益?病人本人的意願有何意義?如何面對既不能否定家屬的同意又有可能出現家屬違背病人本人意願行事可能的困境?The story reported in this article raises some questions on informed consent. To patients with no education and no medical knowledge, how do medical professionals perform informed consent? In the situation of emergence, should medical professionals be excused from the obligation of informed consent? Or should the patient and his or her family be informed after the illness is cured? If this is so, what is the meaning of informed consent? With the conflict between the interests and the patient and the hospital, the cost is a very importance issue. How does the patient express his or her opinions effectively? Patients who have no economic capacity and no medical insurance depend on their families for medical care. How can their rights and interests are protected? What medical professionals should do if the decision of the family is against the will and interests of the individual patient?DOWNLOAD HISTORY | This article has been downloaded 38 times in Digital Commons before migrating into this platform.


2015 ◽  
Vol 64 (4) ◽  
Author(s):  
Massimiliano Colucci

A causa del maggior sviluppo della bioetica negli ambiti della clinica e della sperimentazione biomedica, e per la difficoltà di definire la stessa sanità pubblica, quest’ultima manca ancora di un quadro etico di riferimento. Dopo un breve profilo storico e semantico, si esamina perciò l’antitesi, in letteratura, tra bioetica ed etica di sanità pubblica. Quindi si rileggono e sfatano le tre principali dicotomie su cui viene costruita tale antitesi – pazienti vs. assistiti, individuo vs. popolazione, paternalismo vs. autonomia. Si può affermare che la salute individuale e la salute collettiva sono fini simultanei e inseparabili degli interventi di sanità pubblica. Inoltre, l’autonomia relazionale è l’unica alternativa all’autonomia d’impronta liberale. L’autonomia individuale, infatti, si sviluppa attraverso l’influenza di legami umani e la giustizia sociale. La relazione – come capacità di promuovere la partecipazione e di mantenere la fiducia – è la sostanza della sanità pubblica, e fonte assiologica della sua etica. È cioé il primo valore e il principale criterio per indirizzare gli interventi di sanità pubblica, che saranno tanto più etici quanto più saranno in grado di massimizzare la relazione nel contesto in cui vengono attuati. ---------- Owing to a greater development of bioethics in the fields of clinical medicine and biomedical research, and because of the difficulty to define the public health itself, the latter still lacks an ethical framework. Therefore, after a brief historical and semantic outline, we examine the antithesis, as proposed in the literature, between bioethics and public health ethics. Then, we reread and debunk the three main dichotomies on which such an antithesis is built – patients vs. healthcare users, individual vs. population, paternalism vs. autonomy. We may state that the individual health and the collective health are simultaneous and inseparable purposes of public health interventions. Moreover, the relational autonomy it is the only alternative to the liberal-shaped autonomy. Indeed, the individual autonomy develops through the influence of human bonds and the social justice. The relationship – as the capability to promote the engagement and to maintain trust – is the substance of public health, and the axiological source of its ethics. In other words, it is the first value and the main criterion to address public health interventions; these will be ethical as much as they will be able to maximize the relationship in the context of their fulfilment.


Philosophies ◽  
2020 ◽  
Vol 5 (3) ◽  
pp. 13
Author(s):  
Sahar Latheef ◽  
Adam Henschke

Technological advancements have provided militaries with the possibility to enhance human performance and to provide soldiers with better warfighting capabilities. Though these technologies hold significant potential, their use is not without cost to the individual. This paper explores the complexities associated with using human cognitive enhancements in the military, focusing on how the purpose and context of these technologies could potentially undermine a soldier’s ability to say no to these interventions. We focus on cognitive enhancements and their ability to also enhance a soldier’s autonomy (i.e., autonomy-enhancing technologies). Through this lens, we explore situations that could potentially compel a soldier to accept such technologies and how this acceptance could impact rights to individual autonomy and informed consent within the military. In this examination, we highlight the contextual elements of vulnerability—institutional and differential vulnerability. In addition, we focus on scenarios in which a soldier’s right to say no to such enhancements can be diminished given the special nature of their work and the significance of making better moral decisions. We propose that though in some situations, a soldier may be compelled to accept said enhancements; with their right to say no diminished, it is not a blanket rule, and safeguards ought to be in place to ensure that autonomy and informed consent are not overridden.


Author(s):  
Tongwei YANG ◽  
Zhangqi FENG

LANGUAGE NOTE | Document text in Chinese; abstract also in English.“ 知情同意”這個在西方文化背景中產生的倫理和法律術語在中國仍然是一個比較新的概念。尤其是對於知情同意的權利主體這一基本問題,在立法實踐和臨床實務中仍存在認識模糊和不一致之處。本文基於儒家家庭倫理的基本精神——尊重個人意願與家庭關懷的統一,提出了關於知情同意權利主體的立法建議。在儒家倫理中,主張“和而不同”、“互以對方為重”,體現了尊重個人意願的思想。在儒家倫理中還主張“父慈子孝”、“兄友弟恭”、“夫婦和順”,體現了家庭關懷。可見,在儒家倫理視野下,知情同意權利並非由家屬包辦,也非僅僅屬於患者而和家庭無關,而是在患者做主前提下的家庭參與,是患者做主與家庭關懷的統一。所以,對於有同意能力的患者而言,其本人所作的同意表示才具有法律效力;只有在某些特殊的情形下患者家屬才可以代為簽署知情同意書或者代行知情同意權利。Informed consent has been a core principle endorsed by modern Western medical ethics. It involves patient-physician relationship as well as family relationship. It has been a focus of debates since it was introduced to the Chinese world whether informed consent is agreeable to the cultural ethos of China, and if not, whether it can be applied transculturally. This paper first discusses three principles in the policy of informed consent: 1. the principle of individual autonomy; 2. the principle of non-maleficence; and 3. the principle of effectiveness. Then the paper explores the issue informed consent within the framework of the Confucian concept of family and family values, indicating that in Confucian ethics, the idea of“ harmony in diversity” acknowledges the importance of individuality whereas the notion of reciprocal relationship emphasizes the interconnectedness of everyone in family and society at large. We should always look for a balanced point between the right of the patient and the duty of the physician, and between the interest of an individual person and the interest of the family as a unit.DOWNLOAD HISTORY | This article has been downloaded 183 times in Digital Commons before migrating into this platform.


Author(s):  
Amy Weisman de Mamani ◽  
Merranda McLaughlin ◽  
Olivia Altamirano ◽  
Daisy Lopez ◽  
Salman Shaheen Ahmad

The focus on the individual, typical of mainstream U.S. therapies, is alien to other cultures and can cause discomfort that leads to ineffective treatment and early termination. The aim of this chapter is to describe minorities collectivistic beliefs and introduce a rationale for incorporating them into family therapy in a way that creates a cohesive family environment. Skills from this chapter will aid families in emphasizing commonalities while de-emphasizing differences between family members. Therapists are provided suggestions for how to approach any differences that arise in how family members contribute to the family unit. The chapter provides notes on how to encourage family members to practice cultural traditions and destigmatize views of their ill family member. Examples of relevant homework exercises are provided. A case study of a Korean American family is used to illustrate the process.


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