Ethical Implications of Case‐Based Payment in China: A Systematic Analysis

How health care providers are paid affects how medicine is practiced. It is thus important to assess provider payment models not only from the economic perspective but also from the ethical perspective. China recently started to reform the provider payment model in the health care system from fee‐for‐service to case‐based payment. This paper aims to examine this transition from an ethical perspective. We collected empirical studies on the impact of case‐based payment in the Chinese health care system and applied a systematic ethical matrix that integrates clinical ethics and public health ethics to analyze the empirical findings. We identified eleven prominent ethical issues related to case‐based payment. Some ethical problems of case‐based payment in China are comparable to ethical problems of managed care and diagnosis related groups in high‐income countries. However, in this paper we discuss in greater detail four specific ethical issues in the Chinese context: professionalism, the patient‐physician relationship, access to care and patient autonomy. Based on the analysis, we cautiously infer that case‐based payment is currently more ethically acceptable than fee‐for‐service in the context of China, mainly because it seems to lower financial barriers to access care. Nonetheless, it will be difficult to justify the implementation of case‐based payment if no additional measures are taken to monitor and minimize its existing negative ethical implications.     

Ethical issues in the diagnostic genetic testing process

The diagnostic genetic testing process has certain unique ethical features and deserves special consideration. The purpose of this study was to determine through empirical research, using focussed interview, what ethical issues are involved in the diagnostic genetic testing process. This article describes views and perceptions of adult patients, parents of child patients and various personnel groups (n = 30). The ethical issues were analysed classified into three main categories: a) personnel characteristics, including personality, professional skills, morals and values; b) realization of ethical principles in the examination process, with subcategories of knowledge, autonomy, data protection and equity; and c) consequences of genetic testing, including patients' control over their own lives, manifestation of heterogeneity and outlook on the world. Problematic ethical issues in all three main categories were described in a more many‐sided way by parents and personnel than by adult patients. In the future, attention should be paid to the content areas highlighted by the study, in both clinical practice and further studies.     

Ethical considerations in prenatal diagnosis.

Prenatal diagnostic testing raises a number of important ethical issues, some related to diagnostic testing in general and others related to the special circumstances of pregnancy. These issues are most effectively addressed in the context of a broader understanding of the goals of prenatal diagnosis. Our dual obligations--to the pregnant woman and to the fetus--have an important influence on the goals of testing. Testing seldom leads to treatment beneficial to the fetus, but more often can be beneficial to the pregnant woman, particularly if the information provided enhances her ability to make sound decisions about reproductive matters. The process of prenatal diagnostic testing can, however, limit a woman''s sense of control over the decisions made about her pregnancy. It can also provide an opportunity for third parties to become involved in what are usually considered private matters. It is therefore important that the process of testing include adequate counseling and follow-up and that the patient''s confidence be respected. As prenatal diagnostic technology expands, both in terms of patients to be tested and diagnoses to be sought, society will face difficult questions concerning access to testing and the justification for its use.     

Individual good and common good: a communitarian approach to bioethics

The field of bioethics emerged in the late 1960s and early 1970s. Among its early issues were the protection of human research subjects, the rights of patients, abortion, and reproductive issues. Partly as a reflection of the times, and of those issues, the field became focused on autonomy and individual rights, and liberal individualism came to be the dominant ideology in the 1980s and 1990s. Communitarianism, as an alternative ideology focused more on the common good and the public interest than on autonomy, was a neglected approach. But many bioethical issues can not reasonably be reduced to questions of individualism and choice only. Issues of genetics and reproduction will of necessity touch on the society as a whole, its values, and its social institutions. Serious ethical analysis must take the social implications seriously and not simply assume that they should be left to autonomous choices of individuals. Human beings are social animals and our nature is distorted if we think of ourselves only as co-existing social atoms. Various approaches to communitarianism are outlined, and the question of the relationship between individual good and common good is confronted.     

Relational autonomy,care, and Jehovah's Witnesses in Germany

Drawing from an ethics of care, relational approaches to autonomy have recently emerged in bioethics. Unlike individual autonomy with its emphasis on patients’ rights, choice, and self‐determination which has been the hallmark of bioethics consistent with the ideology of individualism in neoliberal democracies in Western countries, relational autonomy highlights the relatedness, interdependency, and social embeddedness of patients. By examining the mediating role that male Hospital Liaison Committee members in Germany play in facilitating care that supports Jehovah's Witnesses’ refusal of blood transfusions, this article moves beyond ‘dyadic relations’ and contexts of caregiving. It also contributes to a deeper understanding of care and relational conceptualizations of Witness patients’ autonomy globally.     

Bioethics for clinicians: 14. Ethics and genetics in medicine

Information about a patient''s inherited risk of disease has important ethical and legal implications in clinical practice. Because genetic information is by nature highly personal yet familial, issues of confidentiality arise. Counselling and informed consent before testing are important in view of the social and psychological risks that accompany testing, the complexity of information surrounding testing, and the fact that effective interventions are often not available. Follow-up counselling is also important to help patients integrate test results into their lives and the lives of their relatives. Genetic counselling should be provided by practitioners who have up-to-date knowledge of the genetics of and the tests available for specific diseases, are aware of the social and psychological risks associated with testing, and are able to provide appropriate clinical follow-up. Some physicians may elect to refer patients for genetic counselling and testing. However, it is inevitable that all physicians will be involved in long-term follow-up both by monitoring for disease and by supporting the integration of genetic information into patients'' lives.     

African communal basis for autonomy and life choices

I argue that the metaphysical capacity of autonomy is not intrinsically valuable; it is valuable only when used in relation to a community's values and instrumentally for making the proper choices that will promote one's own and the community's well‐being. I use the example of the choice to take one's life by suicide to illuminate this view. I articulate a plausible African conception of personhood as a basis for the idea of relational autonomy. I argue that this conception is better understood as a social‐moral thesis, and not a metaphysical thesis. A metaphysical thesis gives an account of the abstract nature of an atomic individual, his agency, and rational choice. The social‐moral thesis indicates that personhood and autonomy are positive and relational to the life plans, well‐being, material conditions, and the best means for achieving them that are made available and possible by harmonious living in a community. This idea of autonomy is not just having the capacity of freewill; it also involves how such freewill is used, in terms of how an individual's choices are guided by internalized communal values.     

Préservation de la fertilité chez les enfants et les adolescents traités pour un cancer. Aspects relationnels et éthiques

Proposing fertility preservation to an adolescent before chemotherapy that may induce sterility raises numerous relational and ethical issues, as it concerns an adolescent, cancer, sexuality, and parenthood. The goal is to preserve fertility without exacerbating confusion and suffering, without triggering a senses of guilt or irretrievable loss in the event of failure, without hampering his relations with the oncologist caregiver, without transforming his self-esteem and existential dynamics, so that later the memory of the illness and its treatment will not be shameful or traumatic. In routine practice, it is importannt to be attentive to two problems: if semen collection is impossible or fails (how will the adolescent react?) and when parents are too reticent or too eager to do so in the adolescent's place. In these situations, and even more so when a rare, innovative procedure is proposed, it is important to take into account the main principles of clinical ethics: respect the patient's autonomy and dignity, the principles of causing no harm and justice. It is also important to determine the adolescent's objectives, expectations and motivations (whether he accepts or refuses the proposal) which are not necessarily the same as those of the clinicians or parents. Dialogue is not always easy because the diagnosis of cancer (and the resulting shock) is recent, the treatment must commence rapidly, and the doctor and patient do not know each other very well. Training in the use of dialogue and relational skills, in issues specific to adolescents and adolescent psychology, and in solving ethical problems in the medical field can be useful.     

Aboriginal ‘Difference’ and ‘Autonomy’ Then and Now: Four Decades of Change in a Western Desert Society

In just a few decades, Aboriginal people living near Australia's Western Desert fringe have experienced an extraordinarily intense trajectory of change: from a highly autonomous nomadic existence, through ‘first contacts’, the pastoral and mission frontiers, the devastating impacts of alcohol and of Western lifestyle diseases, the outstation movement, resource exploration and mining, a long but largely successful struggle for native title, and much else. In this paper, notions of ‘difference’ and ‘autonomy’ are used to explore these transformations. The situation among the Mardu is here linked to the gulf between government policies and lived Aboriginal experience. If the self‐management thrust of 1970s policies achieved partial restoration of Aboriginal autonomy, recent Federal Government policies are intent on intervention to reduce difference and claw back some of that autonomy. Their determination to force Aboriginal people out of their ‘dysfunctional’ ‘cultural museums’ (homeland settlements) and into greater economic engagement ignores the crucial underpinnings of security and identity among remote Aborigines. The retention of difference, albeit at considerable social cost and entrenched disadvantage, is still strongly preferred by Mardu to the kinds of engagement with the dominant society that not only assault their sense of self but also threaten to overwhelm whatever autonomy remains to them.     

Bioethics for clinicians: 9. Involving children in medical decisions

Medical decisions involving children raise particular ethical issues for physicians and other members of the health care team. Although parents and physicians have traditionally made most medical decisions on behalf of children, the developing autonomy of children is increasingly being recognized in medical decision-making. This poses a challenge for physicians, who must work with the child''s family and with other health care practitioners to determine the child''s role in decision-making. A family-centred approach respects the complex nature of parent-child relationships, the dependence and vulnerability of the child and the child''s developing capacity for decision-making.     

Ethical issues in the diagnostic genetic testing process

The diagnostic genetic testing process has certain unique ethical features and deserves special consideration. The purpose of this study was to determine through empirical research, using focussed interview, what ethical issues are involved in the diagnostic genetic testing process. This article describes views and perceptions of adult patients, parents of child patients and various personnel groups (n=30). The ethical issues were analysed classified into three main categories: a) personnel characteristics, including personality, professional skills, morals and values; b) realization of ethical principles in the examination process, with subcategories of knowledge, autonomy, data protection and equity; and c) consequences of genetic testing, including patients' control over their own lives, manifestation of heterogeneity and outlook on the world. Problematic ethical issues in all three main categories were described in a more many-sided way by parents and personnel than by adult patients. In the future, attention should be paid to the content areas highlighted by the study, in both clinical practice and further studies.     

Self‐report of physical symptoms associated with using mobile phones and other electrical devices

The aim of our work was to study the working‐age population's self‐reported physical symptoms associated with using mobile phones and other electrical devices. A qualitative method was applied using an open‐ended question in a questionnaire, which included questions about the possible influence of new technical equipment on health. We then created subgroups of respondents for different self‐reported symptoms associated with mobile phones and other electrical devices. The research questions were: (1) how the respondents described physical symptoms associated with using mobile phones and other electrical devices and (2) how the answers can be classified into subgroups based on symptoms or devices. We identified the following categories: (1) respondents with different self‐reported symptoms which they associated with using mobile phones (headache, earache, or warmth sensations), (2) respondents who had skin symptoms when they stayed in front of a computer screen, (3) respondents who mentioned physical symptoms associated with using mobile phones and other electrical devices. Total prevalence of self‐reported physical symptoms associated with using mobile phones and other electrical devices (categories 1 and 2) was 0.7%. In the future it will be possible to obtain new knowledge of these topics by using qualitative methods. Bioelectromagnetics 30:431–437, 2009. © 2009 Wiley‐Liss, Inc.     

Ethical issues raised by personalized nutrition based on genetic information

Four principles are taken as basis for the ethical analysis: autonomy, nonmaleficence, beneficence, and justice. Health is understood as a limited aspect of wellbeing. Food is understood as an important aspect of wellbeing, not only an instrument for health. Modern society is characterized by a tendency to identify wellbeing with external rather than subjective circumstances, to identify wellbeing with health, and to create exaggerated health expectations. Based upon this understanding, aspects of personalized nutrition are discussed: genetic testing, counselling, and development of special dietary products. Today the predictive value of genetic tests for personal nutrition is limited, and experimental at best. Recommendations for the future: Personalized nutrition must be based on solid knowledge. Phenotypic analyses should be used when adequate. When a genetic test can have a clear advantage, this should be preferred. Opportunistic screening should only be used when clearly beneficial. Specially trained persons should collect information from genetic tests and carry through councelling on a personal basis. Marketing of genetic tests directly sold to the public should be discouraged. Development of special products for personalized nutrition may be necessary in some cases. However, this may also lead to a medicalization of diet.     

Architecture and self‐assembly of the SARS‐CoV‐2 nucleocapsid protein

The COVID‐2019 pandemic is the most severe acute public health threat of the twenty‐first century. To properly address this crisis with both robust testing and novel treatments, we require a deep understanding of the life cycle of the causative agent, the SARS‐CoV‐2 coronavirus. Here, we examine the architecture and self‐assembly properties of the SARS‐CoV‐2 nucleocapsid protein, which packages viral RNA into new virions. We determined a 1.4 Å resolution crystal structure of this protein's N2b domain, revealing a compact, intertwined dimer similar to that of related coronaviruses including SARS‐CoV. While the N2b domain forms a dimer in solution, addition of the C‐terminal spacer B/N3 domain mediates formation of a homotetramer. Using hydrogen‐deuterium exchange mass spectrometry, we find evidence that at least part of this putatively disordered domain is structured, potentially forming an α‐helix that self‐associates and cooperates with the N2b domain to mediate tetramer formation. Finally, we map the locations of amino acid substitutions in the N protein from over 38,000 SARS‐CoV‐2 genome sequences. We find that these substitutions are strongly clustered in the protein's N2a linker domain, and that substitutions within the N1b and N2b domains cluster away from their functional RNA binding and dimerization interfaces. Overall, this work reveals the architecture and self‐assembly properties of a key protein in the SARS‐CoV‐2 life cycle, with implications for both drug design and antibody‐based testing.     

HEALTH,VITAL GOALS,AND CENTRAL HUMAN CAPABILITIES

I argue for a conception of health as a person's ability to achieve or exercise a cluster of basic human activities. These basic activities are in turn specified through free‐standing ethical reasoning about what constitutes a minimal conception of a human life with equal human dignity in the modern world. I arrive at this conception of health by closely following and modifying Lennart Nordenfelt's theory of health which presents health as the ability to achieve vital goals. Despite its strengths I transform Nordenfelt's argument in order to overcome three significant drawbacks. Nordenfelt makes vital goals relative to each community or context and significantly reflective of personal preferences. By doing so, Nordenfelt's conception of health faces problems with both socially relative concepts of health and subjectively defined wellbeing. Moreover, Nordenfelt does not ever explicitly specify a set of vital goals. The theory of health advanced here replaces Nordenfelt's (seemingly) empty set of preferences and society‐relative vital goals with a human species‐wide conception of basic vital goals, or ‘central human capabilities and functionings’. These central human capabilities come out of the capabilities approach (CA) now familiar in political philosophy and economics, and particularly reflect the work of Martha Nussbaum. As a result, the health of an individual should be understood as the ability to achieve a basic cluster of beings and doings—or having the overarching capability, a meta‐capability, to achieve a set of central or vital inter‐related capabilities and functionings.     

Empathy,social media,and directed altruistic living organ donation

In this article we explore some of the ethical dimensions of using social media to increase the number of living kidney donors. Social media provides a platform for changing non‐identifiable ‘statistical victims’ into ‘real people’ with whom we can identify and feel empathy: the so‐called ‘identifiable victim effect’, which prompts charitable action. We examine three approaches to promoting kidney donation using social media which could take advantages of the identifiable victim effect: (a) institutionally organized campaigns based on historical cases aimed at promoting non‐directed altruistic donation; (b) personal case‐based campaigns organized by individuals aimed at promoting themselves/or someone with whom they are in a relationship as a recipient of directed donation; (c) institutionally organized personal case‐based campaigns aimed at promoting specific recipients for directed donation. We will highlight the key ethical issues raised by these approaches, and will argue that the third option, despite raising ethical concerns, is preferable to the other two.     

Genetics and personal responsibility for health

Advances in genetic medicine may have implications for how we should think about personal responsibility for health, because they may show how it is possible to exert some control over risk factors that were previously thought as beyond the individual's control. Although we cannot control the genes that we are born with, we can often make decisions concerning genetic testing, disease prevention, and treatment. One might argue, therefore, that individuals should be treated as morally responsible for taking effective action in response to genetic risks factors, since genetically based health risks are similar to other health risks. While this argument makes sense as an abstract, philosophical position, it is not a useful guide to public policy. Given these concerns, there is little society can or should do to encourage individuals to address their genetic risk factors, other than praising those who make prudent choices.     

Opportunities in Reform: Bioethics and Mental Health Ethics

Last year marks the first year of implementation for both the Patient Protection and Affordable Care Act and the Mental Health Parity and Addiction Equity Act in the United States. As a result, healthcare reform is moving in the direction of integrating care for physical and mental illness, nudging clinicians to consider medical and psychiatric comorbidity as the expectation rather than the exception. Understanding the intersections of physical and mental illness with autonomy and self‐determination in a system realigning its values so fundamentally therefore becomes a top priority for clinicians. Yet Bioethics has missed opportunities to help guide clinicians through one of medicine's most ethically rich and challenging fields. Bioethics' distancing from mental illness is perhaps best explained by two overarching themes: 1) An intrinsic opposition between approaches to personhood rooted in Bioethics' early efforts to protect the competent individual from abuses in the research setting; and 2) Structural forces, such as deinstitutionalization, the Patient Rights Movement, and managed care. These two themes help explain Bioethics' relationship to mental health ethics and may also guide opportunities for rapprochement. The potential role for Bioethics may have the greatest implications for international human rights if bioethicists can re‐energize an understanding of autonomy as not only free from abusive intrusions but also with rights to treatment and other fundamental necessities for restoring freedom of choice and self‐determination. Bioethics thus has a great opportunity amid healthcare reform to strengthen the important role of the virtuous and humanistic care provider.     

ADOLESCENT AND PARENTAL PERCEPTIONS OF MEDICAL DECISION‐MAKING IN HONG KONG

Objectives: To investigate whether Chinese adolescents in Hong Kong share similar perceptions with their Western counterparts regarding their capacity for autonomous decision‐making, and secondarily whether Chinese parents underestimate their adolescent children's desire and capacity for autonomous decision‐making. Method: ‘Healthy Adolescents’ and their parents were recruited from four local secondary schools, and ‘Sick Adolescents’ and their parents from the pediatric wards and outpatient clinics. Their perceptions of adolescents' understanding of illnesses and treatments, maturity in judgment, risk‐taking, openness to divergent opinions, pressure from parents and doctors, submission to parental authority and preference for autonomy in medical decision‐making are surveyed by a 50‐item questionnaire on a five‐point Likert scale. Results: Findings indicate that Chinese adolescents aged 14–16 perceive themselves to possess the necessary cognitive abilities and maturity in judgment to be autonomous decision‐makers like their Western counterparts. Paradoxically, although they hesitate to assert their autonomy, they are also unwilling to surrender that autonomy to their parents even under coercion or intimidation. Parents tend to underestimate their adolescents' preferences for making autonomous decisions and overestimate the importance of parental authority in decision‐making. Conclusion: ‘14‐and‐above’ Chinese adolescents in Hong Kong perceive themselves as capable of autonomous decision‐making in medically‐related matters, but hesitate to assert their autonomy, probably because of the Confucian values of parental authority and filial piety that are deeply embedded in the local culture.     

Genetic testing and insurance: opportunities and challenges for society.

The increased availability of genetic tests poses new challenges to society. Here, we address the wider implications of genetic testing, with an emphasis on the markets for insurance. It also considers issues such as confidentiality, patient autonomy and fear of discrimination and the doctor-patient relationship.