The dilemma of whether and how to disclose a diagnosis of cancer or of any other terminal illness continues to be a subject of worldwide interest. We present the case of a 62-year-old Japanese woman afflicted with advanced gall bladder cancer who had previously expressed a preference not to be told a diagnosis of cancer. The treating physician revealed the diagnosis to the family first, and then told the patient: "You don't have any cancer yet, but if we don't (...) treat you, it will progress to a cancer". In our analysis, we examine the role of family consent, communication patterns (including ambiguous disclosure), and advance directives for cancer disclosure in Japan. Finally, we explore the implications for Edmund Pellegrino's proposal of "something close to autonomy" as a universal good. (shrink)

The ‘family consent’ process has been placed at the centre of Chinese clinical practice. Although there has been critical analysis of how the process functions in relation to the autonomy and rights of patients, there has been little examination of the perceptions and attitude of patients and their families and the medical professionals, in relation to moral dilemmas that arise in real cases in the bioethical discourse. When faced with a consent form in an emergency situation, the (...) family member's capacity to act is reduced, as he/she becomes enmeshed in the hospital structure of tacit, socially-imposed rules. In a questionnaires based on a real death case in 2008, 70.9% of the surveyed medical professionals (n = 3,665) disagreed with performing surgery without the consent of the family even if the patient's life was in danger, while 36.6% of the surveyed patients (n = 1,198) hold the same position. This work demonstrates the weakness of the family consent process as a safeguard of patient's autonomy. Finally, I argue that saving the patient's life should be the overriding obligation rather than the respect for the surrogate's autonomous choice at such a decisive moment. (shrink)

This paper asks whether investigation into the ontology of the extended family can help us to think about and resolve questions concerning the nature of the family’s decision-making authority where organ donation is concerned. Here, “extended family” refers not to the multigenerational family all living at the same time, but to the family extended past its living boundaries to include the dead and the not yet living. How do non-existent members of the family figure (...) into its ontology? Does an answer to this question help to resolve questions about the distribution of authority within the extended family? (shrink)

In the West, mainstream bioethicists tend to appreciate intimate relationships as a hindrance to individual autonomy. Scholars have even argued against approaching a mother to donate a kidney to save the life of her child; the request, they claim, is too manipulative and, thereby, violates her autonomy. For Chinese bioethicists, such a moral analysis is absurd. The intimate relationship between mother and child establishes strong mutual obligations. It creates mutual moral responsibilities that often require sacrifices for each other. This paper (...) argues that while aiding others is a moral duty, helping one’s family is a much stronger duty and poses no threat to one’s autonomy. For Confucianism, empathetic intimate feelings, the heart and mind of ren, rest at the root of morality. It requires that we, as moral beings, assume duties to relieve the suffering of others. The more intimate the relationship the stronger the obligation to assist. The family is a closely knitted moral community. Family members often share living resources, mutual experiences, and a sense of identity. Family members act as a social unit, and, ordinarily, mutual obligations among members have priority over duties to those outside of the family. For Confucian bioethics, family-based consent to medical treatment is regarded as natural and reasonable. Family-based decision making is a taken-for-granted norm of social life. While close family members have priority, Confucianism extends such obligations outward toward members of the extended family and the society at large. There is a general principle of gradation of love, which reflects different degrees of personal intimacy and, therefore, of moral obligation. In this fashion, Confucianism seeks to treat the whole of society as one extended family. Hence, in bioethics, mutual responsibility and family-based consent are regarded as basic principles. Through a series of case discussions, this paper illustrates that atomistic individual-based autonomy offers but a poor response to bioethical issues. (shrink)

The current position on the deceased’s consent and the family’s consent to organ and tissue donation from the dead is a double veto—each has the power to withhold and override the other’s desire to donate. This paper raises, and to some extent answers, questions about the coherence of the double veto. It can be coherently defended in two ways: if it has the best effects and if the deceased has only negative rights of veto. Whether the double (...) veto has better effects than other policies requires empirical investigation, which is not undertaken here. As for rights, the paper shows that it is entirely possible that individuals have a negative right of veto but no positive right to compel acceptance of their offers. Thus if intensivists and transplant teams turn down the deceased’s offer, they do not thereby violate the deceased’s right. This leaves it open whether non-rights based reasons—such as avoiding bad publicity or distress —require intensivists and transplant teams to turn down or accept the deceased’s offer. This, however, is beyond the scope of this paper. The current position may or may not be wrong, but it is at least coherent. (shrink)

We explore the ethics of using motivational interviewing, an evidence-based, client-centred and directional counselling method, in conversations with next of kin about deceased solid organ donation. After briefly introducing MI and providing some context around organ transplantation and next of kin consent, we describe how MI might be implemented in this setting, with the hypothesis that MI has the potential to bring about a modest yet significant increase in next of kin consent rates. We subsequently consider the objection (...) that using MI in this context would be manipulative. Although we cannot guarantee that MI would never be used in a problematically manipulative fashion, we conclude that its use would, nevertheless, be permissible as a potential means to increase next of kin consent to deceased solid organ donation. We propose that MI be trialled in consent situations with next of kin in nations where there is widespread public support for organ donation. (shrink)

The government of Bangladesh approved the human organ transplantation law in 1999 and updated it in 2018. This legislation approved both living‐related donor and posthumous organ transplantation. The law only allows family members to legally donate organs to their relatives. The main focus of this study was to explore how Bangladeshis make donation decisions on familial organs for transplantation. My ethnographic fieldwork with forty participants (physicians and nurses, a healthcare administrator, organ donors, recipients, and their relatives) disclosed that the (...) organ donation decision was family‐based. An assessment of the relationship between religion, culture, and biomedicine leads to the conclusion that deciding on donating organs to relatives is primarily family‐based and is perceived to be steeped in Islamic ethical principles and religious cultural tradition. The family‐based consent and motivation for donor‐recipient pair organ transplantation strengthen an altruistic environment for the family and act as the moral and legal authority that ensures ethical healthcare outcomes for Bangladeshis. (shrink)

Bioethics is a subject far removed from the Chinese, even from many Chinese medical students and medical professionals. In-depth interviews with eighteen physicians, patients, and family members provided a deeper understanding of bioethical practices in contemporary China, especially with regard to the doctor-patient relationship (DPR) and informed consent. The Chinese model of doctor-family-patient relationship (DFPR), instead of DPR, is taken to reflect Chinese Confucian cultural commitments. An examination of the history of Chinese culture and the profession of (...) medicine in China is used to disclose the deep roots of these commitments. The author predicts that the DFPR model will further develop in China but that it will maintain its Chinese character. (shrink)

This essay indicates that Confucian family-based ethics is by no means a stumbling block to organ donation in China. We contend that China should not change to an opt-out consent system in order to enhance donation because a “hard” opt-out system is unethical, and a “soft” opt-out system is unhelpful. We argue that the recently-introduced familist model of motivation for organ donation in mainland China can provide a proper incentive for donation. This model, and the family priority (...) right that this model supports, is ethically justifiable in terms of Confucian family-based ethics. (shrink)

Background Based on the principle of informed consent, doctors are required to fully inform patients and respect their medical decisions. In China, however, family members usually play a special role in the patient’s informed consent, which creates a unique “doctor-family-patient” model of the physician-patient relationship. Our study targets young doctors to investigate the ethical dilemmas they may encounter in such a model, as well as their attitudes to the family roles in informed consent. Methods (...) A questionnaire was developed including general demographic characteristics, the fulfillment of the obligation to fully inform, who will be informed, and the ethical dilemmas in decision-making. We recruited a total of 421 doctors to complete this questionnaire, of which 368 met the age requirements for this study. Cross tabulation and Pearson’s chi-squared test were used to analyze the differences between types of patients for categorical variables, and a p-value < 0.05 was considered statistically significant. Results Our data shows that only 20 doctors (5.40%) stated “informing the patient alone is sufficient” when it comes to informing patients of their serious conditions. The rest of the participants would ensure that the family was informed. When facing elderly patients with decision-making capacity, the data was statistically different (3.8%; P < 0.001) The primary reason for ensuring that family members be informed differs among the participants. In addition, when family members asked doctors to conceal the patient’s medical condition for the best interests of patients, 270 doctors (73.4%) would agree and cooperate with the family. A similar proportion (79.6%) would do so when it comes to elderly patients. Conclusions (1) Chinese doctors pay extra attention to informing the patient’s family, which may not be in the patient’s best interests. (2) Chinese doctors treat adult (but not elderly) patients and elderly patients differently when it comes to informing family members. (3) When family members request that doctors withhold information from patients “in the best interest of the patient,” the majority choose to comply with the request, although this may cause them distress. (shrink)

This paper explores organ donation through the perspective of Reconstructionist Confucianism. I argue that for organ donation in China to be morally permissible, public policy must conform to the norms of Confucian benevolence. Reconstructionist Confucianism appreciates benevolence as an objectively important feature of morality deeply connected to moral rules governing propriety, integrity, righteousness, and human freedom. Here, benevolence involves sincere affection for another as an intrinsic good, rather than as a means to achieve other purposes. It requires developing self-restraint and (...) proper respect for others. As I argue, family-based consent is essential for ensuring that organ donation conforms to such an understanding of benevolence and is, thereby, compatible with Confucian culture. Consequently, legislation in China should solidify family-based consent for organ donation to consolidate a benevolent family environment as the basis of morality, law, and social existence. (shrink)

Children's consent to treatment remains a contentious topic, with confusing legal precepts and advice. This paper proposes that informed consent in children should be regarded as shared between children and their families, the balance being determined by implicit, developmentally based negotiations between child and parent--a "family rule" for consent. Consistent, operationalized procedures for ethically obtaining consent can be derived from its application to both routine and contentious situations. Therefore, use of the "family Rule" concept (...) can consistently define negligent procedure in obtaining consent from children, and could be used as a unifying framework in the development of new professional guidelines. A "guideline"-based approach to children's consent to treatment may offer greater individuality than a "rights"-based approach, though careful training and oversight will be needed for it to be effective. (shrink)

Akabayashi and Slingsby's (2006) article reminds us that the North American emphasis on individualistic autonomy is not universal. As the authors explain, personal identity in Japan is not construc...

The ethics of deceased organ procurement (OP) is supposedly based on individual consent to donate, either explicit (opt-in) or presumed (opt-out). However, in many cases, individuals fail to express any preference regarding donation after death. When this happens, the decision to remove or not to remove their organs depends on the policy’s default option or on family preferences. Several studies show that in most countries the family plays a significant and often decisive role in the process of (...) decision-making for OP. Depending on the country, the family may be allowed to take different kinds of actions in different situations, and this may be granted either by law or by clinical practice only. This adds much complexity to the usual classification of consent policies in two categories: opt-in and opt-out. Here we propose a novel and comprehensive taxonomy of the models of consent for OP according to three variables: (1) the deceased’s wishes, if any, (2) family wishes, if any, and (3) default policies. By analysing these models of consent, we show that they rely on at least three different concepts of autonomy: individual autonomy, relational autonomy, and family autonomy. In light of this analysis, we discuss the ethical debates surrounding two policy approaches: presumed consent and family veto. (shrink)

Bioethicists think about families in terms of conflicting interests. This mistake results from an impoverished notion of informed consent. Only by adequately characterizing the process of informed consent can we capture the phenomenon of shared decisionmaking.

This special thematic issue of The Journal of Medicine and Philosophy brings together a cross-cultural set of scholars from Asia, Europe, and North America critically to explore foundational questions of familial authority and the implications of such findings for organ procurement policies designed to increase access to transplantation. The substantial disparity between the available supply of human organs and demand for organ transplantation creates significant pressure to manipulate public policy to increase organ procurement. As the articles in this issue explore, (...) however, even if well intentioned, the desire to maximize organ procurement does not justify undermining foundational elements of human flourishing, such as the family. While defending at times quite different understandings of autonomy, informed consent, and familial authority, each author makes clear that a principled appreciation of the family is necessary. Otherwise, health care practice will treat the family in a cynical and instrumental fashion unlikely to support social or individual good. (shrink)

In recent years, Confucian ethics has been considered as an alternative to the individual-oriented model of medical decision-making that is dominating in the modern West.

The Western focus on personal autonomy as the normative basis for securing persons’ consent to their treatment renders this autonomy-based approach to informed consent vulnerable to the charge that it is based on an overly atomistic understanding of the person. This leads to a puzzle: how does this generally-accepted atomistic understanding of the person fits with the emphasis on familial consent that occurs when family members are provided with the opportunity to veto a prospective donor’s wish (...) to donate after she has died and her organs are being considered for harvesting? It is argued in this paper that this charge can be met and this puzzle dissolved once it is recognized that autonomy is an inherently social concept. (shrink)

Refusing consent to organ donation remains unacceptably high, and improving consent rates from family or next-of-kin is an important step to procuring more organs for solid organ transplantation in countries where this approval is sought. We have thus far failed to translate fully our limited understanding of why families refuse permission into successful strategies targeting consent in the setting of deceased organ donation, primarily because our interventions fail to target underlying cognitive obstacles. Novel interventions to overcome (...) these hurdles, incorporating an understanding of cognitive psychology and behavioral change therapy, may be beneficial. One potential intervention is to use the concept of nudge theory, where decision-making is influenced by encouraging positive reinforcement and indirect suggestion. Purposefully nudging families to given consent for organ donation by understanding, and then overcoming, their inherent cognitive biases is novel but also controversial. This article explores the roles of relatives in decisions about organ donation, how nudge theory translates to organ donation and discusses the arguments for and against its application. (shrink)

Background Obtaining informed consent in the clinical setting is an important yet challenging aspect of providing safe and collaborative care to patients. While the medical profession has defined best practices for obtaining informed consent, it is unclear whether these standards meet the expressed needs of patients, their families as well as healthcare providers. The authors sought to address this gap by comparing the responses of these three groups with a standardised informed consent paradigm. Methods Piloting a web-based (...) ‘reverse’ simulation paradigm, participants viewed a video showing a standardised doctor engaging in an informed consent discussion. The scenario depicted a simulated patient with psychotic symptoms who is prescribed an atypical antipsychotic medication. 107 participants accessed the simulation online and completed a web-based debriefing survey. Results Survey responses from patients, family members and healthcare providers indicated disparities in information retention, perception of the doctor's performance and priorities for required elements of the consent process. Conclusions To enhance existing informed consent best practices, steps should be taken to improve patient retention of critical information. Adverse events should be described in the short-term and long-term along with preventative measures, and alternative psychosocial and pharmacological treatment options should be reviewed. Information about treatment should include when the medication takes therapeutic effect and how to safely maintain the treatment. The reverse simulation design is a model that can discern gaps in clinical practice, which can be used to improve patient care. (shrink)

Coercion is commonly said to invalidate consent, and that is always true if the source of the coercion is the physician. However, if it is a family member who coerces the patient to consent, the resultant consent may be quite valid and treatment should proceed.

BackgroundGenealogical research and ancestry testing are popular recreational activities but little is known about the impact of the use of these services on clients’ biological and social families. Ancestry databases are being enriched with self-reported data and data from deoxyribonucleic acid analyses, but also are being linked to other direct-to-consumer genetic testing and research databases. As both family history data and DNA can provide information on more than just the individual, we asked whether companies, as a part of the (...) consent process, were informing clients, and through them clients’ relatives, of the potential implications of the use and linkage of their personal data.MethodsWe used content analysis to analyse publically-available consent and informational materials provided to potential clients of ancestry and direct-to-consumer genetic testing companies to determine what consent is required, what risks associated with participation were highlighted, and whether the consent or notification of third parties was suggested or required.ResultsWe identified four categories of companies providing: 1) services based only on self-reported data, such as personal or family history; 2) services based only on DNA provided by the client; 3) services using both; and 4) services using both that also have a research component. The amount of information provided on the potential issues varied significantly across the categories of companies. ‘Traditional’ ancestry companies showed the greatest awareness of the implications for family members, while companies only asking for DNA focused solely on the client. While in some cases companies included text recommending clients inform their relatives, showing they recognised the issues, often it was located within lengthy terms and conditions or privacy statements that may not be read by potential clients.ConclusionsWe recommend that companies should make it clearer that clients should inform third parties about their plans to participate, that third parties’ data will be provided to companies, and that that data will be linked to other databases, thus raising privacy and issues on use of data. We also suggest investigating whether a ‘generational consent’ should be created that would include more than just the individual in decisions about participating in genetic investigations. (shrink)

There is currently unprecedented attention in Australia on the misidentification of women victim-survivors as family violence ‘predominant aggressors’—this focus has largely been oriented towards the role of the police. Less research has considered court responses to misidentification and specifically, the role that legal practitioners play in recognising and responding to clients who have been misidentified. This article addresses this key gap in the literature through an exploration of 18 legal practitioners’ experiences of representing misidentified clients in the civil protection (...) order system in the Australian state of Victoria. The findings suggest that legal practitioners face a number of challenges when representing clients who have been misidentified and that the magistrates’ courts are ill-equipped to respond to misidentification. As a consequence, a culture of respondents consenting to orders that should never have been made against them is maintained. This article calls for a greater focus on the role that the courts can play in providing a ‘safety net’ for victim-survivors who have been misidentified. (shrink)

Informed consent is one of the most important ethical and legal principles in the United States, including Texas, and reflects a profound respect for individuals and their ability to make decisions in their own best interest. It is also a critical underpinning of medical practice, although how it is actually carried out has not been well studied. A survey was conducted in the private practices and a hospital in the Texas Medical Center in Houston, Texas to ascertain how physicians, (...) patients and patient's family members perceive and demonstrate the elements of informed consent. In-depth interviews of twelve physicians, three patients and three family members were carried out. For physicians, consent was an explicit and implicit aspect of virtually all medical practice. Physicians would seek patient input concerning medical decisions whenever possible and might also discuss care choices with families. However, they often made decisions based upon what they perceived as the patient's best interests. Patients expected the physician to involve them in the decision process, but whether they turned to family members, or even others to assist them, varied considerably. Although Texas physicians respect the competent patient as the primary decision maker, they may bypass a formal surrogate decision maker to gain input from others, including their own view of what is in the patient's best interest. (shrink)

The informed consent process provides protection by ensuring that potential research subjects understand the goals of the research project they are being asked to voluntarily partake in as well as the risks associated with the study. We examined subjects' comprehension and ability to identify issues explicitly raised during the consent process that was conducted as part of their participation in a genetic family study (GFS). We employed cross-sectional design by providing a short, self-administrative questionnaire to 246 participants (...) recruited from families enrolled in the Extended Family Investigation of Nephropathy and Diabetes (EFIND) study conducted at the University of Texas Health Science Center. Participants responded to the questionnaire directly after their enrollment in the EFIND study. The questionnaire consisted of multiple-choice questions and focused on the understanding of the purposes, procedures, and risks associated with their participation in the EFIND study. These questions were formulated to reflect basic information presented to subjects through the consent process. Responses to questions were expressed as percentages, placing equal weight on each response. Participants were Mexican-American, 62.3% female and averaged 35.2 ± 12.7 years old (range: 18-76). Our findings showed that the average comprehension score was 58. About 30% of the participants did not know the name of the study, and 70% did not identify all elements related to the study procedures. The most striking finding was the lack of understanding concerning the social risks associated with participation in EFIND. While 35.1% of participants identified all potential physical risks, only 1.3% could identify all of the social risks. Our findings showed that participants comprehension score was significantly associated with their level of education and income. We conclude that using the informed consent process to communicate research social risks to subjects participating in GFS has some limitations. Future research directed at improving risk communications to subjects of low socioeconomic levels participating in genetic research is justified. (shrink)

Objectives: To study the consent process experienced by participants who are enrolled in a molecular genetic research study that aims to find new genetic mutations responsible for an apparently inherited disorder.Design: Semi-structured interviews and analysis/description of main themes.Participants: 78 members of 52 families who had been recruited to a molecular genetic study.Results: People were well informed about the goals, risks and benefits of the genetic research study but could not remember the consent process. They had mostly been recruited (...) to take part by trusted clinicians or their relatives but had little memory of, or concern about signing consent forms. Families appeared to regard the research as a continuation of their, or their relatives’, clinical care.Conclusions: Ethical review should be more flexible in its attitude to consent forms and written information sheets for some sorts of research. For rare genetic disease studies where research has been discussed fully within the clinical setting then the consent obtained at that time could suffice rather than needing extra consent at a later stage. However, clinician-researchers will need to ensure that their duty of care extends for the duration of the research and beyond. (shrink)

Organ procurement policy from the recently deceased recasts families into gatekeepers of a scarce medical resource. To the frustration of organ procurement teams, families do not always authorize organ donation. As a result, efforts to increase the number of organs available for transplantation often seek to limit the authority of families to refuse organ retrieval. For example, in some locales if a deceased family member has satisfied the legal conditions for first-person prior assent, a much looser and easier standard (...) to satisfy than informed consent, organ retrieval may proceed despite the family’s objections. Some countries have replaced voluntary consent to organ donation with forms of organ conscription. Often referred to under the misnomer “presumed consent,” such policies legalize the harvesting of organs at death, unless individuals exercise official options to opt out. As this article explores, however, there are good grounds for affirming the authority of the family to consent to or to deny organ donation on behalf of recently deceased family members, as well as to reject first-person assent and “presumed consent” policies of organ procurement. Insofar as individuals have failed clearly and competently to provide informed consent to organ donation, moral authorization for the use of the person and his body ought to be grounded on the foundational authority of the family, rather than the state’s supposed interests in obtaining organs for transplantation. (shrink)

Filial obligation and its implications have been little-debated in ethics. The basis of informed consent in libertarian positions may be challenged by inclusion of others beyond the immediate doctorpatient relationship. Some of the literature arguing for and against filial duty, including feminist literature, is presented as a backdrop to the argument that a patient’s family, and further, his or her community, contains the source of a broader perspective regarding decisions concerning his or her medical treatment. Communitarian models allow (...) for a medical decision to be owned by some or all stakeholders in patient outcomes. Although such a position undoubtedly confronts traditional notions of autonomy, it offers an alternative that may positively impact the practice of medicine by providing a more holistic treatment context. New models premised on shared decision-making will be presented as frameworks that may provide a theoretical basis for greater physician input into medical decisions that impact a patient’s family members and in more global terms, his or her community. (shrink)

The practice around informed consent in clinical medicine is both inconsistent and inadequate. Indeed, in busy, contemporary health care settings, getting informed consent looks little like the formal process developed over the past sixty years and presented in medical textbooks, journal articles, and academic lectures. In this article, members of the Society of Teachers of Family Medicine (STFM) Collaborative on Ethics and Humanities review the conventional process of informed consent and its limitations, explore complementary and alternative (...) approaches to doctor‐patient interactions, and propose a new model of consent that integrates these approaches with each other and with clinical practice. The model assigns medical interventions to a consent continuum defined by the discrete categories of traditional informed consent, assent, and nondissent. Narrative descriptions and clinical exemplars are offered for each category. The authors invite colleagues from other disciplines and from the academic ethics community to provide feedback and commentary. (shrink)

To be autonomous, a person must also have authentic moral values. She must act on her own values, not on values that were improperly pressed upon her. To respect a patient's autonomy, then, a caregiver must do more than carry out her requests. The caregiver must honor the patient's authentic requests. But how to do that?

: This paper examines informed consent in relation to research involving the newly dead. Reasons are presented for facilitating advance decision making in relation to postmortem research, and it is argued that the informed consent of family members should be sought when the deceased have not made a premortem decision. Regardless of whether the dead can be harmed, there are two important respects in which family consent can serve to protect the dead: (1) protecting the (...) deceased's body from being used for research that is incompatible with the person's premortem preferences and values and (2) protecting the deceased's body from being subject to disrespectful treatment. These claims are explained and justified, and several objections are critically examined. Additional reasons for securing family consent are presented including to protect them from additional emotional distress, to respect their wishes about wanting to have a say, and to maintain public trust in the medical profession and medical research. The paper also examines the scope of disclosure in relation to postmortem research. (shrink)

Most writing on informed consent in Africa highlights different cultural and social attributes that influence informed consent practices, especially in research settings. This review presents a composite picture of informed consent in Nigeria using empirical studies and legal and regulatory prescriptions, as well as clinical experience. It shows that Nigeria, like most other nations in Africa, is a mixture of sociocultural entities, and, notwithstanding the multitude of factors affecting it, informed consent is evolving along a purely (...) Western model.Empirical studies show that 70–95% of Nigerian patients report giving consent for their surgical treatments. Regulatory prescriptions and adjudicated cases in Nigeria follow the Western model of informed consent. However, adversarial legal proceedings, for a multiplicity of reasons, do not play significant roles in enforcing good medical practice in Nigeria. Gender prejudices are evident, but not a norm. Individual autonomy is recognized even when decisions are made within the family. Consent practices are influenced by the level of education, extended family system, urbanization, religious practices, and health care financing options available. All limitations notwithstanding, consent discussions improved with increasing level of education of the patients, suggesting that improved physician's knowledge and increasing awareness and education of patients can override other influences.Nigerian medical schools should restructure their teaching of medical ethics to improve the knowledge and practices of physicians. More research is needed on the preferences of the Nigerian people regarding informed consent so as to adequately train physicians and positively influence physicians’ behaviors. (shrink)

I argue that valid informed consent is ethically required for organ donation from individuals declared dead using neurological criteria. Current policies in the U.S. do not require this and, not surprisingly, current practices inhibit the possibility of informed consent. Relevant information is withheld, opportunities to ensure understanding and appreciation are extremely limited, and the ability to make and communicate a free and voluntary decision is hindered by incomplete disclosure and other practices. Current practices should be revised to facilitate (...) valid informed consent for organ donation. (shrink)

Informed consent, decision-making styles and the role of patient-physician relationships are imperative aspects of clinical medicine worldwide. We present the case of a 74-year-old woman afflicted with advanced liver cancer whose attending physician, per request of the family, did not inform her of her true diagnosis. In our analysis, we explore the differences in informed-consent styles between patients who hold an "independent" and "interdependent" construal of the self and then highlight the possible implications maintained by this position (...) in the context of international clinical ethics. Finally, we discuss the need to reassess informed-consent styles suitable to the needs of each patient regardless of whether he or she resides in the United States or in Japan. (shrink)

China is developing an ethical and sustainable organ donation and procurement system based on voluntary citizen donation. The gift-of-life metaphor has begun to dominate public discussion and education about organ donation. However, ethical and legal problems remain concerning this “gift-of-life” discourse: In what sense are donated organs a “gift-of-life”? What constitutes the ultimate worth of such a gift? On whose authority should organs as a “gift-of-life” be donated? There are no universal answers to these questions; instead, responses must be compatible (...) with local cultural values. This paper argues that from a Confucian point of view, organs should be viewed as a gift from the donor’s family, and that final dispositional authority should also rest with the donor’s family. The worth of such a “gift” rests on the virtue of ren, the origin of which is family love. Ultimately, I will argue that a family-based consent model for deceased organ donation is not merely justified, but morally required in the Chinese cultural context. (shrink)

This chapter explores what we actually mean by data donation after death, and what different types of data donation metadata are involved in the process. It then provides an analysis of the ethical ramifications of each of these different types of data, outlines the concepts of data advance directives and data donation guardians as one way of dealing with these issues, and considers alternative governance mechanisms. The degree of control given to the first data donors may need to be high (...) in order to maintain trust, but over time attitudes may evolve towards everyone giving “big consent” to data donation. (shrink)

Given the widening gap between the number of individuals on transplant waiting lists and the availability of donated organs, as well as the recent plateau in donations based on neurological criteria, there has been a growing interest in expanding donation after circulatory determination of death. While the prevalence of this form of organ donation continues to increase, many thorny ethical issues remain, often creating moral distress in both clinicians and families. In this article, we address one of these issues, namely, (...) the challenges surrounding patient and surrogate informed consent for donation after circulatory determination of death. First we discuss several general concerns regarding consent related to this form of organ donation, and then we address additional issues that are unique to three different patient categories: adult patients with medical decision-making capacity or potential capacity, adult patients who lack capacity, and pediatric patients. (shrink)

This paper evaluates the Hong Kong approach to consent regarding the forgoing of life-sustaining treatment for incompetent elderly patients. It analyzes the contextualized approach in the Hong Kong process-based, consensus-building model, in contrast to other role-based models which emphasize the establishment of a system of formal laws and a clear locus of decisional authority.Without embracing relativism, the paper argues that the Hong Kong model offers an instructive example of how strategic ambiguities can both make good sense within particular cultural (...) context and serve important moral goals. (shrink)

Consented autopsy is almost non-existent in the Middle-East where established social and cultural beliefs regarding the procedure might discourage family members from requesting a consented autopsy. Evidence suggests that new information is obtained from consented autopsies. It would not be in the best interest of medicine if social and cultural misconceptions succeed in erasing the existence of consented autopsies entirely.