There is a long-standing debate concerning the eligibility of patients suffering from alcohol-related end-stage liver disease (ARESLD) for deceased donor liver transplantation. The question of retrospective and/or prospective responsibility has been at the center of the ethical discussion. Several authors argue that these patients should at least be regarded as partly responsible for their ARESLD. At the same time, the arguments for retrospective and/or prospective responsibility have been strongly criticized, such that no consensus has been reached. (...) A third option was proposed as a form of compromise, namely that responsibility should only be used as a tiebreaker in liver allocation. The present study provides an ethical investigation of this third option. First, we will provide an overview of the main arguments that have been offered for and against the use of responsibility as an allocation criterion. Second, we will explore the concept of responsibility as a tiebreaker in detail and discuss several types of situations, in which responsibility could be used as a tiebreaker, as well as the main ethical challenges associated with them. As we will show, an ethical justified use of responsibility as a tiebreaker is limited to a very restricted number of cases and is associated with a number of ethical concerns. For this reason, waiting time should be preferred as a tiebreaker in liver allocation, even though the criterion of waiting time, too, raises a number of equity-related concerns. (shrink)

Photo by Tingey Injury Law Firm on Unsplash ABSTRACT The coverage of healthcare costs allegedly brought about by people’s own earlier health-adverse behaviors is certainly a matter of justice. However, this raises the following questions: justice for whom? Is it right to take people’s past behaviors into account in determining their access to healthcare? If so, how do we go about taking those behaviors into account? These bioethical questions become even more complex when we consider them in the context of (...) a commitment to publicly funded, universal healthcare coverage. INTRODUCTION Healthcare coverage of lifestyle-related conditions is certainly a matter of justice. However, this raises the following justice-related question: Is it right to consider people’s past behaviors in determining their access to healthcare? If so, the methods of taking those behaviors into account must be fair and justifiable. This bioethical question becomes even more complex when we consider it in the context of a commitment to publicly funded, universal healthcare coverage. This paper takes an old, classic debate, evaluates newer approaches, and offers an argument favoring a combined approach which alters the liberal-egalitarian solution to account for social justice. ANALYSIS l. Causes of Disease If healthcare coverage were universal, irrespective of socioeconomic status and lifestyle, people would contribute to the cost of remedying the lifestyle-induced health problems of others. In the West, lifestyle-related diseases are burdensome.[1] This paper approaches this concern from a western lens that incorporates both a European tradition of “social safety nets” and an American tradition of personal freedoms. By taking such an approach, solutions to the consequences of one’s past behavior burdening others must consider an individual’s personal freedom to choose to act as he or she wishes, with the distributive social and economic equality of the many. The concept of disease caused by lifestyle and diet is proven. Many health conditions include behavioral risk factors. Multi-pack smoking increases the risk of chronic lung disease, while obesity increases the risk of type 2 diabetes. Inattention to high blood pressure, high cholesterol, and a lack of exercise leads to increased risks of coronary artery disease.[2] While poor lifestyle choices certainly influence these conditions, their causes are multifactorial, and it is difficult to say that any single string of poor choices led to their development. In a scenario where two men excessively eat fast food for 20 years, several discrete factors impact whether any of them might suffer an ischemic-embolic stroke or not. Genetics, circumstances, and activity will also contribute to outcomes. ll. Alcohol-Related End-Stage Liver Disease One paper suggests that alcohol-related end-stage liver disease (ARESLD) differs from other multifactorial disorders as alcohol alone causes the disease.[3] It justifies attributing personal responsibility to patients with ARESLD because the condition develops only after the cumulative effects of large quantities of alcohol consumed from years to decades.[4] However, the paper undermines its position by admitting that even the susceptibility to becoming an alcoholic has some degree of genetic predisposition.[5] Given the extreme scarcity of donor livers, some patients may be prioritized over others on the transplant waiting list. Since donor livers cannot be given to everyone, transplanting a liver into an alcoholic may result in death for competing candidates whose liver disease was not their fault. All else being equal, if bioethicists avoid claiming moral deficiency or judgment, those with apparently self-inflicted ARESLD will not be deprived of treatment but will have a lower priority for transplant.[6] In contrast, another position suggests that it is often difficult to define what behaviors are punishable as these are largely personal and value-laden.[7] Still, people do not support using their own resources to support the consequences of others’ poor choices, no matter how objective.[8] In democratic societies, one must take into consideration community morals and values.[9] Even if we were to punish people for their health-adverse behaviors, we could not logistically employ the vigorous and sustained efforts necessary to determine whose actions are morally weak.[10] lll. The Liberal-Egalitarian Proposal One past argument proposes a liberal-egalitarian solution to manage personal responsibility for so-called “lifestyle diseases.”[11] This Rawlsian system combines the European-style “social safety net” commitment to social and economic equality with the American liberal notion of pluralist toleration and personal freedoms. This idealized system aims to hold people responsible for their choices rather than the consequences to mitigate the downside of blaming those who might not be blameworthy. The approach avoids determining the questionable nature of luck and personal responsibility for health outcomes, fairness in the distribution of economic burden, and the intrusiveness required to practically determine who acts in a morally wrong and health-adverse way. The liberal-egalitarian model, a theory of distributive justice, has two facets: the liberal principle that people should be held accountable for their choices and the egalitarian principle that people who make the same choices should have the same outcomes.[12] This model attempts to fuse responsibility with equity by seeking to reward good behavior and tax bad behavior rather than punish the consequences of the action and navigate who deserves treatment. For instance, the hospital bedside is not the appropriate place to introduce responsibility for one’s health outcomes.[13] This appeals to the reality that, at that time, discerning the true causes of disease was not plausible and to humanity in avoiding a heartless and cruel approach. An argument in favor of the liberal-egalitarian model considers its method of implementation. This approach assumes that the healthcare system treats all individuals regardless of their choices or ability to cover costs. The liberal-egalitarian model also assumes that a certain adverse health condition is related, statistically speaking, to the consumption of a certain good and that good can be taxed. As such, it proposes to tax the consumption of that good to finance the collective burden which arises from that good’s consumption rather than require individuals to pay for their own treatment. In the example of ARESLD, the recommended solution would be taxing all alcohol. While a systematic infrastructure is not explicit, there is the implication that a per-unit tax can be imposed on alcohol so the total tax revenue would make up for the additional healthcare costs due to consumption.[14] Upholding the principle that all people who make the same choices should face the same costs, all consumers of alcohol would pay the same tax, regardless of factors such as genetic predisposition to alcoholism, lifestyle, or expected cost of treatment. Upholding the principle of individual responsibility, this model does not deny treatment to anyone, neutralizing factors outside that individual’s control by imposing the tax ex-ante. Other people are not burdened by those who consume the good. People who consume alcohol face a burden proportional to the amount consumed. This tax-based implementation is justified so long as the tax is not prohibitively high for the average consumer. Further, the model mitigates concerns over the intrusiveness of ascribing morality to health-adverse behaviors. lV. Moral and Social Arguments Against the Liberal-Egalitarian Position Arguments against the liberal-egalitarian model concerns its many assumptions. First, this model assumes that consumption of such goods is directly related to the health outcome and that these goods can be taxed.[15] Certain people genetically predisposed to alcoholism would be predisposed to consume more alcohol. The model falls short when applied to scenarios where health outcomes are not consumption-based, such as engaging in unsafe sex or abstaining from healthy lifestyle choices like exercise. Second, some might argue that the liberal-egalitarian model fails to remain neutral. Residual moral judgments tied to consumption choices introduce non-neutrality. Although taxation in free societies is determined by democratic procedures rather than by individuals in the healthcare system, moral and value-based judgments will be implicit in deciding what behaviors are taxable, such as the purchase of cigarettes. Third, the liberal-egalitarian model fails to determine whether one’s behavior is autonomous, as socio-cultural-economic factors may influence it and behavior is more a product of society, peer pressure, or income. Those also may reflect systemic inequalities. Therefore, this model, which rewards, or taxes based solely on decisions, regardless of their consequences and motivations, fails to consider that a person’s decisions may not be completely autonomous. V. Libertarian Arguments Against the Liberal-Egalitarian Model a. State Intrusiveness as Counter to the Liberal-Egalitarian Model Last, there is a libertarian worry that if the state guarantees universal healthcare coverage to all people, the state will have to become highly intrusive and investigate people’s morals.[16] At least one-third of all disease burden in North America, Europe, and the Asia-Pacific is attributable to lifestyle measures such as tobacco smoking, alcohol consumption, high cholesterol, and obesity.[17] With these various lifestyles, it is not likely to agree on what conduct to tax or condemn.[18] The fine-toothed comb required to determine whether each citizen has been engaging in these behaviors would intrude on daily life and personal freedom. Libertarians champion the argument that impractical intrusiveness would result from universal healthcare, and such a degree of intrusiveness would likely be universally unacceptable.[19] The liberal-egalitarian model mitigates the libertarian worry about state intrusiveness as it does not involve prying into one’s life and choices other than taxing goods. A liberal state should ideally be neutral to how people decide to live their lives. In all, libertarians can rest assured that the liberal-egalitarian tax-based model, through its ex-ante implementation, will require no prying state eyes. States that provide universal healthcare coverage and wish to condemn certain misconduct do not need to become overly intrusive to carry out measures to hold individuals accountable. b. Fairness Another libertarian worry regarding the guarantee of universal healthcare coverage in the context of lifestyle-driven diseases is that the public will be burdened unfairly with covering others’ ill-advised mistakes or bad luck. An ideal system to address this worry would link treatment or payment for treatment with whatever behavior caused that need.[20] The distribution of burdens should be linked to how different individuals contributed to the creation of those burdens. Applied to health policy, we should ask how the need for a certain treatment arose when determining how to distribute its cost.[21] The liberal-egalitarian model aspires to hold individuals responsible for their choices, not for the consequences of such choices. This model significantly mitigates the libertarian worry over unfair burdens for covering other people’s mistakes or social conditions, which lead to those bad outcomes, by ensuring to not burden others with any of the costs for the treatment of people who decide to engage in certain health-adverse behaviors. The aforementioned taxation-based system would only tax those who also engage in the health-adverse behavior through consumption, and that tax directly pays for the necessary collective treatment. As such, those who do not consume the good are not involved with the payment scheme, while those who do consume the good are responsible for payment in a matter proportional to the amount of the good they have consumed. Vl. Universal Coverage Taking a step back, one should consider whether these worries regarding the coverage of apparently self-inflicted health conditions in the context of universal healthcare are worthwhile issues. One perspective raises what is called the culturally imagined objection — an idea erroneously held by many that sick people, especially those who are poor and uneducated, bring these illnesses upon themselves due to poor decision-making and irresponsible risk-taking.[22] This perspective critiques the uniquely American view that, since individuals are free to choose their lifestyles, they should bear the costs of their lifestyle.[23] Taking this argument further, some (perhaps the strongly libertarian) would say that the poor health status among many individuals is the price individuals must pay for their American way of life and the liberty and freedom to live as they wish. However, people should not completely punish individuals for their health-adverse behaviors because these choices are largely pre-determined by a person’s socioeconomic influences.[24] The outcomes from these allegedly ill-advised behaviors, which largely affect poorer people, are not just poor behavior but rather a public health crisis. Perhaps the state and its people should take collective responsibility and cover the costs of treatment for those health outcomes without question, as a form of public service. Rather than worrying about accountability and taxing bad behavior or intrusiveness into personal decisions, some might argue that people need to collectively take responsibility for reducing the overarching systemic inequalities and covering the associated treatment costs as a measure of public health. Vll. Proposed Solution Given the strengths of the liberal-egalitarian model and taking into account libertarian and social justice-oriented objections, an ideal solution for the coverage of lifestyle-related health problems needs to consider the complex relationship between a person’s behaviors and their apparent health outcomes. It must consider how society as a whole passes judgment on behaviors and how to take into account that many health-adverse decisions are not truly autonomous decisions, as various genetic and socioeconomic factors influence them. An ideal solution combines the liberal-egalitarian tax-based model with the social justice concerns of universal coverage. Whatever the cost for the treatment of medical issues resulting in part or entirely from lifestyle and diet, taxes collected from spending associated with the behavior (like the purchase of alcohol, junk food, and cigarettes) ex-ante should fund 50 percent of the cost of treatment, while the universal healthcare taxation scheme should include the other 50 percent. Such a system would provide an incentive to avoid the purchases that can lead to unhealthy consumption and make healthier choices, slightly punish and discourage such purchases through taxation, yet not overly punish people whose outcomes may have more to do with socioeconomic factors and genetics. Adding public responsibility demonstrates acknowledgement that health care is in the public interest and can mitigate public health inequalities. This solution would fuse personal responsibility with the public responsibility of state-sponsored social improvement while ensuring that all people have fair access to necessary treatment, no matter their ability to pay. CONCLUSION The 50-50 system this paper proposes reflects both justice and personal responsibility in covering healthcare costs allegedly brought about by people’s own health-adverse behaviors. By allocating tax revenue from consumption that contributes or even alone causes poor health outcomes, such a system incorporates personal responsibility. By using general tax revenue for health care, such a system would meet the libertarian requirement of providing care without any moral investigation of past behaviors and the social justice consideration of providing health care to those who may have unwittingly ventured into ill-health due to systemic injustice, socioeconomics, or genetics. - [1] Cappelen, A. W. (2005). Responsibility in health care: A liberal egalitarian approach. Journal of Medical Ethics, 31(8), 476–480. https://doi.org/10.1136/jme.2004.010421 [2] Moss, A. H. (1991). Should alcoholics compete equally for liver transplantation? JAMA: The Journal of the American Medical Association, 265(10), 1295–1298. https://doi.org/10.1001/jama.1991.03460100097032 [3] Moss, p. 1295-1298. [4] Moss, p. 1296. [5] Moss, p. 1295-1298. [6] Moss, p. 1295-1298. [7] Cohen, C. IS THIS SUPPOSED TO BE COHEN AND BENJAMIN (1991). Alcoholics and liver transplantation. JAMA: The Journal of the American Medical Association, 265(10), 1299–1301. https://doi.org/10.1001/jama.1991.03460100101033 [8] Cohen, p. 1299-1301. [9] Moss, p. 1297. [10] Cohen, p. 1300. [11] Cappelen, p. 478-480. [12] Cappalen, p. 478-480. [13] Cappelen, p.479. [14] Cappelen, p. 479. [15] Cappelen, p. 479 [16] Cohen, p. 1301. [17] Cappelen, p. 478. [18] Cohen, p. 1299-1301. [19] Cohen, p. 1301. [20] Cappelen, p. 476-480. [21] Cappelen, p. 476-480. [22] Kawachi, I. (2005). Why the United States is not number one in Health. Healthy, Wealthy, and Fair, 18–33. https://doi.org/10.1093/acprof:oso/9780195170665.003.0013 [23] Kawachi, p. 18-33. [24] Kawachi, p. 18-33. (shrink)

BackgroundSimilar to many other countries, in Germany patients with alcohol-related liver disease are obliged to prove their abstinence before being accepted on a waitlist for liver transplantation. Health care professionals (HCPs) must both treat patients and ensure that patients have proven their abstinence. The aim of this exploratory study was to develop a deeper understanding of how HCPs deal with this dual role.MethodsThe study used semi-structured interviews as the source of data. 11 healthcare professionals from ten (...) of the 22 German transplant centers were interviewed. After transcription, a qualitative content analysis was performed.ResultsWe found that these HCPs faced an ethical dilemma, as they must balance the roles of being both a treatment provider (the therapist role) and an assessor (the monitoring role). To solve this dilemma, the strategy seems to be a tendency for the HCPs to take on one dominant role amongst these two roles. HCPs who prefer to take on the therapist role seem to feel burdened by the 6-month abstinence rule and the obligation to monitor their patients. HCPs who prefer to take on the monitoring role tend to have negative assumptions about the patients. HCPs also reported the impression that patients perceive HCPs as more involved in monitoring and less open to the therapeutic role. From this it can be deduced that current regulations and structures lead both to stress for HCPs and to suboptimal therapy for those affected.ConclusionsThe results showed that current transplantation guidelines can have a negative impact on both patient care and the burdens on the HCPs. From our point of view, there are various changes that could be made to the current clinical practice that would help solve this dilemma. For instance, integrating other assessment criteria that are more closely adapted to the health status trajectory and psychosocial background of the individual patient would be both possible and would lead to improvements in practice. (shrink)

In a provocative 1991 paper, Alvin Moss and Mark Siegler argued that it may be fair to give individuals with alcohol-related end-stage liver disease lower priority for a liver transplant than those who develop end-stage liver disease from other factors. Like other organs, there is a substantial gap between the available livers for transplantation and the number of people who need liver transplants. Yet, unlike those with end-stage renal disease, who can survive for some (...) time on dialysis before receiving a kidney transplant, those with liver failure will die without a liver transplant. (shrink)

Many believe that it is morally wrong to give lower priority for a liver transplant to alcoholics with end-stage liver disease than to patients whose disease is not alcohol-related. Presumably, alcoholism is a disease that results from factors beyond one's control and therefore one cannot be causally or morally responsible for alcoholism or the liver failure that results from it. Moreover, giving lower priority to alcoholics unfairly singles them out for the moral vice of heavy (...) drinking. I argue that the etiology of alcoholism may involve enough control for the alcoholic to be responsible for his condition and accordingly have a weaker claim to receive a new liver than someone who acquires the disease through no fault of his own. In addition, I show why it is more plausible to reframe the question of priority in terms of control and responsibility rather than virtue and vice. Given that medical resources like livers are scarce, some people may justifiably be given lower priority than others in receiving these resources. (shrink)

Background and aims: Liver transplantation provides an opportunity of survival for patients with liver failure, however, this procedure is known to be psychologically and physically fatiguing for patients and their informal caregivers. The aim of this study was to investigate how perceived social support and the distribution of dependency were associated with the psychological wellbeing of patients waiting for liver transplantation and their caregivers, as a dyad. Methods: The present was a cross sectional study. 95 participants were (...) recruited at a hospital in Northern Italy, during the psychological evaluation for inclusion in the transplantation list: 51 patients (19 with alcohol-related illness), and 44 family caregivers. Both patients and caregivers filled in a Symptom Checklist and Kelly's Dependency Grids. Patients also compiled the Medical Outcomes Study Social-Support Survey, and caregivers the Family Strain Questionnaire Short- Form. Results: Caregivers reported important levels of strain, also strongly related to a worsening of their own and patients’ symptoms Patients with alcohol-related pathologies had a narrower social network, which corresponded to an increase in family strain. On the sample as a whole, regression analyses showed that perceived social support and dependency measures did not predict patients’ and caregivers’ symptoms. Nevertheless, cluster analysis identified a group of caregivers who distributed their dependency more and experienced lower levels of depression, anxiety and strain. Conclusions: These results suggest the usefulness of a dyadic approach in the research, prevention and care of liver diseases. A deeper comprehension of the functioning of dyads will help practitioners in the identification of situations at risk. (shrink)

Some philosophers and physicians have argued that alcoholic patients, who are responsible for their liver failure by virtue of alcoholism, ought to be given lower priority for a transplant when donated livers are being allocated to patients in need of a liver transplant. The primary argument for this proposal, known as the Responsibility Argument, is based on the more general idea that patients who require scarce medical resources should be given lower priority for those resources when they are (...) responsible for needing them and when they are competing with patients who need the same resources through no fault of their own. Since alcoholic patients are responsible for needing a new liver and are in direct competition with other patients who need a new liver through no fault of their own, it follows that alcoholic patients ought to be given lower priority for a transplant. In this article, I argue against the Responsibility Argument by suggesting that in order for it to avoid the force of plausible counter examples, it must be revised to say that patients who are responsible for needing a scarce medical resource due to engaging in behavior that is not socially valuable ought to be given lower priority. I'll then argue that allocating organs according to social value is inconsistent or in tension with liberal neutrality on the good life. Thus, if one is committed to liberal neutrality, one ought to reject the Responsibility Argument. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Institute of Medicine’s Report on Non-Heart-Beating Organ TransplantationRoger Herdman (bio), Tom L. Beauchamp (bio), and John T. Potts Jr. (bio)In December 1997, the Institute of Medicine (IOM) released a report on medical and ethical issues in the procurement of non-heart-beating organ donors. This report had been requested in May 1997 by the Department of Health and Human Services (DHHS). We will here describe the genesis of the IOM (...) report, the medical and moral concerns that led the DHHS to sponsor it, the process of producing it, and its conclusions. The analyses, findings, and recommendations of the report are also reviewed, in particular the central issues that led to suggestions for policy changes.Transplantation BackgroundAs a first step, some background in the relevant aspects of organ transplantation will prove useful. For the purposes of this analysis, “transplantation” involves the transfer of cells, tissues, or solid organs from one human to another to replace the structure or function of comparable body components that, through injury or disease, are defective or of inadequate function. The IOM report deals with solid organs, primarily kidneys and livers, whose blood supply is reconnected in the organ recipient, in contrast to cells, like bone marrow, and tissues, like corneas. A variety of donor types exists for organ transplantation, each with particular medical and scientific conditions.Living donors are healthy (and usually genetically related) individuals who volunteer to provide either a whole, paired organ such as a kidney or a section of an organ such as a liver. Cadaver donors are individuals who have died and from whom a full array of organs can be taken. “Heart-beating” cadaver donors are individuals who have suffered “brain death,” that is, irreversible cessation of function of the whole brain including the brain stem; and “non-heart-beating” donors (NHBDs) are individuals who are ill or injured, but not “brain dead,” and who have suffered cardiopulmonary death, that is, irreversible cessation of cardiac and respiratory function. NHBDs can be “controlled,” which means that [End Page 83] they can be sustained by artificial life support systems until a medical and family decision is made to terminate futile life support. This can be done at a scheduled time and in a controlled manner, and organs can then be recovered for transplantation. NHBDs can also be “uncontrolled,” which means that their hearts and breathing have stopped through disease or injury at an unexpected time or in an uncontrolled manner, and they cannot be resuscitated; the organs of some individuals of this description can be recovered for transplantation. The IOM report focused on both controlled and uncontrolled NHBDs and on problems specific to them.The questions that were asked and addressed in the IOM report became current and salient beginning in 1992 with the establishment of the University of Pittsburgh “Policy for the Management of Terminally Ill Patients Who May Become Organ Donors After Death.” This policy addressed controlled NHBDs and the ethical questions raised by their use; much of the discussion was reported in the June 1993 special issue of the Kennedy Institute of Ethics Journal. Public notice and anxiety about some of these concerns were sharpened and refocused by national and local media allegations of improper treatment of donors at the Cleveland Clinic in 1997, specifically premature—i.e., antemortem—recovery of organs and administration of drugs that allegedly might hasten donor death.The DHHS Request for StudyIt is not surprising that several federal actions would be taken in response to these events. Some, such as the results of a transplantation task force, remain largely internal to DHHS at this writing. Others are public, such as the IOM study of the NHBD situation. In May 1997, the DHHS initiated contacts with the IOM with the goal of exploring federal concerns about the medical and ethical treatment of NHBDs, in particular the allegations directed at the Cleveland Clinic.The DHHS response should be understood in at least three contexts. First, living donors and uncontrolled NHBDs were essentially the only donor types in the early days of transplantation in the United States. The technologies, ethics, and social acceptance of controlling and terminating life support for... (shrink)

Deaths of Despair (DoD), or mortality resulting from suicide, drug overdose, and alcohol-related liver disease, have been rising steadily in the United States over the last several decades. In 2020, a record 186,763 annual despair-related deaths were documented, contributing to the longest sustained decline in US life expectancy since 1915–1918. This forum feature considers how health humanities disciplines might fruitfully engage with this era-defining public health catastrophe and help society better understand and respond to the crisis.

BackgroundThe German guidelines for liver transplantation stipulate that every patient with alcohol-related liver disease needs to prove evidence of a 6-month abstinence period before they can be admitted to the waiting list for liver transplantation. This internationally widespread abstinence rule has been criticised as it prevents patients at least temporarily from receiving an effective and potentially life-saving therapy. This poses the question of how this abstinence rule is depicted and justified by transplantation professionals.ArgumentsIn case of (...) the 6‑month abstinence rule, guidelines are used as a tool for rationing health care. Four frames of interpretation can be reconstructed from the ethical and medical literature. Each linguistically mediated frame offers a different representation of the 6‑month abstinence rule. According to these different framings, the 6‑month waiting period is depicted (1) as a diagnostic tool to determine the regenerative capacity of the liver, (2) as a prognostic tool to determine the prospects of success of a transplantation, and (3) to determine the drinking behaviour after transplantation. In a further context, the abstinence rule (4) is interpreted as an expression of an obligation to avoid behaviour harmful to health.ConclusionThese four frames provide linguistically mediated patterns of interpretation that are used by different actors to limit the indication for liver transplantation. They give rise to different ethical questions that allow a systematic ethical assessment of the 6‑month abstinence rule. (shrink)

While solid organ transplantation for patients with substance use issues has attracted ethical discussion, a typology of the ethics themes has not been articulated in the literature. We conducted a scoping review of peer-reviewed literature on solid organ transplantation and substance use published between January 1997 and April 2016. We aimed to identify and develop a typology of the main ethical themes discussed in this literature and to identify gaps worthy of future research. Seventy articles met inclusion criteria and underwent (...) inductive content analysis. Four main ethical themes were identified: (1) personal responsibility; (2) utility; (3) moral character; and (4) fairness. Each theme had multiple sub-themes and there was substantial overlap between themes. This scoping review identified a disproportionate emphasis in the literature regarding personal responsibility, which was referenced by each of the other themes, and a narrow focus on alcohol and liver. We recommend future research further investigate these connections between ethical themes and focus on ethical issues associated with transplants from organ groups other than liver for patients who use substances other than alcohol. (shrink)

Organ transplantation has increased worldwide while the number of organ donors have not increased similarly. Consequently, the waiting period for transplant candidates is prolonged. Patient narratives have uncovered physical and psychosocial suffering in the transplantation process. However, relatively few studies have explored patients’ experiences in the actual waiting period. This qualitative study was conducted in Norway and aimed to describe patients’ experiences of being accepted as recipients of a new liver and their waiting following this decision. A sample of (...) 21 patients with end‐stage liver disease, placed on the ordinary waiting list for a liver transplant, were interviewed in the hospital before they went home to wait for a compatible liver. Uncertainty related to life and death was a major issue, both in the waiting period and as a response to being put on the waiting list. Another central issue was their overwhelming lack of energy. Patients inferred a linear relationship between lack of energy, physical limitations and mental distress. Despite major advances in medical treatment, little follow‐up was given during the waiting period and most of the patients seemed resigned to the inevitability of their suffering. This raises issues of health personnel responsibility and a need to heighten awareness about patient suffering during the waiting period. (shrink)

In response to the rising obesity rate in China, the Chinese government has used the social media platform WeChat to encourage the public to lose weight. This article investigates the losing weight posts in 健康中国 [Healthy China], the official WeChat account of the National Health Commission of the People’s Republic of China. Taking a multimodal critical discourse analysis approach, I identify the dominant discourses used to represent obesity and individuals related to obesity. One of the most prominent features (...) of the discourses is a trend of responsibilizing weight management by three sub-discourses surrounding obesity, i.e. medical discourse (obesity as a disease), moral discourse (obesity as a self-management issue) and gendered discourse (obesity as a female and mothering issue). I explore how the responsibilization discourse might be understood in the context of China’s efforts in facilitating the making of health-conscious citizens, which echo neoliberal ideas that normalize individual responsibility for obesity. A special note is paid to women. Apart from the neoliberalism-underpinned responsibility, the posts also position women under the Confucian expectation of ‘responsible mothers’ in terms of childhood obesity. This may lead to dual-responsibilities for women and heighten the weight stigma women experience in the society. (shrink)

ABSTRACT Public health communication campaigns have been credited with helping raise awareness of risk from chronic illness and new infectious diseases and with helping promote the adoption of recommended treatment regimens. Yet many aspects of public health communication interventions have escaped the scrutiny of ethical discussions. With the transference of successful commercial marketing communication tactics to the realm of public health, consideration of ethical issues becomes an essential component in the development and application of public health strategies. Ethical issues in (...) public health communication are explored as they relate to eight topics: ‘targeting’ and ‘tailoring’ public health messages to particular population segments; obtaining the equivalence of informed consent; the use of persuasive communication tactics; messages on responsibility and culpability; messages that apply to harm reduction; and three types of unintended adverse effects associated with public health communication activities that may label and stigmatise, expand social gaps, and promote health as a value. We suggest that an ethical analysis should be applied to each phase of the public health communication process in order to identify ethical dilemmas that may appear subtle, yet reflect important concerns regarding potential effects of public health communication interventions on individuals and society as a whole. (shrink)

Discussions of patient-centred care and patient autonomy in bioethics have tended to focus on the decision-making context and the process of obtaining informed consent, leaving open the question of how patients ought to be counselled in the daily maintenance of their health and management of chronic disease. Patient activation is an increasingly prominent counselling approach and measurement tool that aims to improve patients’ confidence and skills in managing their own health conditions. The strategy, which has received little conceptual or ethical (...) analysis, raises important questions about how clinicians ought to foster confidence and a sense of control in their patients without exposing them to blame, stigma and other harms. In this paper, we describe patient activation, discuss its relationship to personal responsibility, autonomy and health disparities, and make recommendations regarding its use and measurement. (shrink)

Photo by Karl Raymund Catabas on Unsplash “After Buddha was dead, they still showed his shadow in a cave for centuries – a tremendous, gruesome shadow. God is dead; but given the way people are, there may still for millennia be caves in which they show his shadow. – And we – we must still defeat his shadow as well!” – Friedrich Nietzsche[1] INTRODUCTION Friedrich Nietzsche famously declared that “God is dead!”[2] but lamented that his contemporaries remained living in the (...) shadow of God. For Nietzsche, the morality of his time was still based in the Christian tradition, even though faith in God was waning. Bioethics lives under a similar shadow: the shadow of Enlightenment Era-rationalism. Bioethics curricula focus on principles derived from Kantian deontology and utilitarianism. The allure of maintaining a moral framework that provides a rational method that can be handily applied to any situation remains strong. The principlist approach advanced by Tom Beauchamp and James Childress is taught to nearly all medical students in the United States,[3] and is essentially the canonical ethical framework of bioethics. In this model, the principle of autonomy is Kantian in nature, and the principles of beneficence and non-maleficence are utilitarian in nature.[4] Moreover, the presented framework is an approach that, when applied rationally to any healthcare scenario, will yield an outcome “considered moral.”[5] This reflects a faulty conception of philosophy that plagues much of bioethics, wherein the only contribution of philosophy pertinent to bioethics is moral philosophy elucidated by European thinkers in the Enlightenment Era. The landscape of moral philosophy has evolved significantly from the 18th century. However, the bioethical world has not kept up with the philosophical world, remaining instead in the shadow of antiquated moral thinking. Also lacking in bioethics are other disciplines of philosophy, such as philosophy of language, existentialism, and aesthetics, which are often given no consideration at all. The inclusion of both modern moral philosophy and other philosophical fields is necessary if bioethics is to survive its transition into modernity. l. The Shadow of Enlightenment Enlightenment Era philosophers such as Immanuel Kant argued that one need only employ reason to obtain knowledge; emotion bore no relevance when determining ethical behavior. Kant’s moral theories thus privileged a duty to act according to moral imperatives over feelings. Other Enlightenment Era philosophers such as John Locke developed systems that attempted to quantify human goods and human ills. This quantification potentially reduces human welfare and suffering to utility. Today, in the world of philosophy, such a “neutral analysis,” as Cora Diamond noted, is “dead or moribund.”[6] Bernard Williams remarked that such moral philosophy is “empty and boring,”[7] and G. E. M. Anscombe stated that it “no longer generally survives.”[8] And yet, just as the atheists in Nietzsche’s world dwelt in the moral code of a dead God, bioethicists still pursue a unified moral system that takes an input, applies some moral rules, and generates a moral outcome, like the four principles approach that Beauchamp and Childress laid out.[9] Some detractors of principlism take issue with their approach for not being unified enough and want to replace it with a procedural framework that is even more systematic and complicated. They argue that the resulting moral framework would be a “comprehensive decision procedure for arriving at answers”[10] that retains the “impartiality that is an essential part of morality.”[11] The shadow of rationalist morality has caused bioethical decision making to become detached and rigid when bioethics should concern itself with the humans whose lives it affects. A rational, divorced-from-emotion way of thinking ultimately fails to yield satisfactory results when decisions are made by and for emotional beings. Dr. Paul Farmer, among others, championed the idea that bioethics should be de-philosophized, as philosophy, cold and calculated, fails to adequately respond to the realities of those worst off.[12] Instead, Dr. Farmer emphasized the inclusion of the social sciences, like sociology and anthropology, in bioethics. Undoubtedly, Dr. Farmer was on the right track; bioethics should certainly engage directly with the people whom its decisions involve. If the narrow band of moral philosophy currently found in bioethics – that of stringent rationalism – were all that philosophy had to offer, I, too, would advocate for a de-philosophization. Ludwig Wittgenstein notes that to attempt to capture the complexity of moral thinking in a manner that employs reason alone and casts aside emotion is a “hopeless task,” like reconstructing a sharp image “from a blurred one.”[13] Unfortunately, bioethics is mired in the remnants of this hopeless task. To Dr. Farmer, the dominant moral framework was too restrictive and was unresponsive to the social and humanitarian needs of those whom bioethics is meant to help. As such, he wished to free bioethics from the shadow of a morality derived from rationalist thinkers. ll. Beyond Rationalism Like Nietzsche, who tried to resolve Europe’s post-religion vacuum by providing his society with a new way to live, Dr. Farmer wanted to replace the rationalist philosophy upon which bioethics was built with a “resocialization” of the field.[14] I agree with Dr. Farmer’s call for resocialization, as well as his denouncement of philosophy as it exists in bioethics. Evaluating risks and benefits along a predetermined array of moral principles is far too rigid and impersonal to guide what are often the most important decisions one will make. For Dr. Farmer, the most needed change was restoring the social element of bioethics. However, in advocating for this resocialization, Dr. Farmer casts philosophy as the antithesis of social science, noting that “few would regard philosophy … as a socializing discipline.”[15] I disagree. Rationalist moral philosophy may be lacking in socializing force, but there are other fields of philosophy that are responsive to our social reality. Rather than de-philosophizing bioethics, it makes more sense to replace the antisocial philosophies predominant in bioethics with prosocial philosophies better suited to it. Of course, the contribution of philosophy to bioethics is more than moral theories from the Enlightenment Era. There are more recent philosophical contributions from outside the field of moral philosophy that have roused bioethical interest. Jennifer Blumenthal-Barby, et al., argue for philosophy’s continued place in bioethics, citing Derek Parfit’s “non-identity problem,” which altered the landscape of reproductive ethics, and David Chalmers’ contributions to philosophy of consciousness, which have implications for the moral status of brain organoids.[16] Still, these are narrow applications of philosophy to highly specialized areas of bioethics, which not all bioethicists are inclined to delve into. Philosophy in bioethics should not be confined to niche applications in specialist fields but should influence all bioethical thought. Fortunately, there remains untapped a wealth of philosophical disciplines that pertains to exactly this. Philosophy of language investigates the nature of meaning and understanding in communication, which is a necessary social action. Successfully deciphering and conveying moral values in discourse is a bioethicist’s bread and butter, as is resolving disagreements and reaching agreements. Indeed, it is often the case that miscommunication lies at the root of an impasse between a doctor and a patient. An understanding of the nature of the disagreement would help resolve the conflict, as different types of disagreements require different interventions for resolution. For instance, a “substantive disagreement,”[17] in which two parties use the same terms in the same ways and have a fundamental disagreement on which outcome is more desirable, can be resolved only if one party yields to the other. On the other hand, a “merely verbal dispute,”[18] in which two parties use the same terms to represent entirely different concepts and values, requires standardization of terminological usage for its resolution. As such, no one can overstate the moral importance of successful communication in bioethics, and an exploration of language itself would prove invaluable to a bioethicist’s training. Existentialism is another subset of philosophy that acknowledges the social nature of human existence, noting that one’s being in the universe is concomitant with the existence of others sharing the same universe.[19] Thus, there is the recognition that whatever existence is, it is not complete without the existence of others. With this as a starting point, existentialists examined how to live meaningfully with others in this world. Since ethics crucially involves others, it is no surprise that existentialists pondered how to live moral lives. Existentialist conceptions of morality did not revolve around acting in accordance with a set of rules, but rather, recognized individual freedom in choosing how to act and emphasized acting authentically. In this vein, bioethicists should commit to doing what is right rather than committing to applying a set of principles. Existentialism, while part of the broader bioethics literature, is less common throughout bioethics curricula and deserves more prominence. Martin Heidegger, for instance, emphasized the difference between two types of thinking: “calculative thinking” and “meditative thinking.” Heidegger characterizes calculative thinking as a computation, wherein from some given starting conditions “definite results”[20] are determined, and contrasts this with meditative thinking, which he describes as “thinking which contemplates the meaning which reigns in everything that is.”[21] Heidegger was critical of the pervasiveness of calculative thinking, seeing it as the “ground of thoughtlessness,”[22] in which we only relate to the world in a meaningless, mechanical way. This is the emphasized type of thinking in rationalist conceptions of morality popular in bioethics; from a set of starting conditions, a series of rules are applied, and a moral outcome is calculated. Such a technique, however, discounts the personal meaning individuals place on the aspects of their lives relevant to their decision making, as well as the meaning in committing to doing what is right. Under calculative thinking, such a commitment is reduced to rote rule-following. A turn to meditative thinking would ensure that bioethical decisions comport with living meaningful lives. Even aesthetics, a discipline devoted to examining beauty and taste,[23] has a place in bioethics. Just as the viewing of a painting, the listening of a song, or the reading of a book elicits an effective response, hearing a patient’s story leaves an emotional imprint. The recounting of a traumatic moment imparts sadness, and a joyous occasion begets joy in the listener as well. As acknowledged in the field of everyday aesthetics, these aesthetic experiences often spur us to act:[24] The unsightly appearance of a polluted riverbank drives us to remove the trash; the presence of sorrow in one’s life drives us to ameliorate it. To be mindful of aesthetic experiences and allow them to affect us emotionally is paramount to the motivation of a bioethicist to serve the patient, not out of an obligation to a job description, but out of a desire to truly avail the patient of their anguish. For example, the new field of narrative medicine utilizes critical reading and literary techniques to train clinicians and bioethicists in emotional understanding and listening skills that stress the social aspects of medicine beyond rational analysis and decision making. CONCLUSION Dr. Farmer is absolutely correct; bioethics is in dire need of resocialization. It should not be the case that the justification for a moral action is essentially that “the rules say so,” or that simply by teaching such rules to medical students, the very act of making bioethical decisions that diverge from those determined by principles can be seen as an act of “bad faith … hubris or, worse, malpractice.”[25] As bioethicists are coming to realize, the rationalist philosophical traditions that bioethics was founded upon are past their expiry, and the time for change is now. Indeed, as Dr. Farmer urges, “socializing disciplines” like anthropology, history, political economy, and sociology are necessary to humanize the field of bioethics.[26] So too, however, can philosophy be a socializing discipline, if we know where to look. Bioethics should evolve. Its new goal should be to focus on meaningful human relationships, and to phase out rigid, impersonal modes of moral thinking. The limited sampling of unsatisfying moral theories from hundreds of years ago leaves many bioethics students cold, and it is easy to see why bioethicists are ready to part ways with philosophy. I believe this is a move in the wrong direction; there is a place for philosophy in the future of bioethics. Just as bioethics needs a resocialization, it is also needs of a re-philosophization. These enrichments complement one another. There is more to bioethics than mechanically determining the right course of action in a healthcare setting. Bioethics engages with the most ancient of philosophical questions: questions of what makes human existence meaningful, what makes us who we are, how we want to relate to others, how and why we feel, what our place in the world is, how we can communicate what we think, and why our moral intuitions are so compelling. We would be remiss if we did not begin to investigate additional contributions to morality from a wider range of philosophies that try to provide answers to such questions, as they offer a richness to moral thinking that cannot be gleaned from traditional bioethical approaches alone. - [1] Friedrich Wilhelm Nietzsche, The Gay Science: With a Prelude in German Rhymes and an Appendix of Songs, ed. Bernard Williams, Josefine Nauckhoff, and Adrian Del Caro, Cambridge Texts in the History of Philosophy, 109. [2] Nietzsche, 120. [3] Daniel C O’Brien, “Medical Ethics as Taught and as Practiced: Principlism, Narrative Ethics, and the Case of Living Donor Liver Transplantation,” The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine 47, no. 1 : 97, https://doi.org/10.1093/jmp/jhab039. [4] K. D. Clouser and B. Gert, “A Critique of Principlism,” Journal of Medicine and Philosophy 15, no. 2 : 219–36, https://doi.org/10.1093/jmp/15.2.219. [5] O’Brien, “Medical Ethics as Taught and as Practiced,” 97. [6] Cora Diamond, “Having a Rough Story about What Moral Philosophy Is,” New Literary History 15, no. 1 : 168, https://doi.org/10.2307/468998. [7] Bernard Williams, Morality: An Introduction to Ethics, Canto ed, xvii. [8] G. E. M. Anscombe, “Modern Moral Philosophy,” Philosophy 33, no. 124 : 1, https://doi.org/10.1017/S0031819100037943. [9] Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 7th ed, 13. [10] Clouser and Gert, 233. [11] Clouser and Gert, “A Critique of Principlism,” 235. [12] Paul Farmer and Nicole Gastineau Campos, “Rethinking Medical Ethics: A View from Below,” Developing World Bioethics 4, no. 1 : 17–41, https://doi.org/10.1111/j.1471-8731.2004.00065.x. [13] Ludwig Wittgenstein, Philosophical Investigations, ed. Joachim Schulte, trans. P. M. S. Hacker, 4th edition, 40. [14] Farmer and Campos, “Rethinking Medical Ethics,” 20. [15] Farmer and Campos, 20. [16] Jennifer Blumenthal-Barby et al., “The Place of Philosophy in Bioethics Today,” The American Journal of Bioethics: AJOB, June 30, 2021, 3–5, https://doi.org/10.1080/15265161.2021.1940355. [17] Brendan Balcerak Jackson, “Verbal Disputes and Substantiveness,” Erkenntnis 79, no. S1 : 31–54, https://doi.org/10.1007/s10670-013-9444-5. [18] C. S. I. Jenkins, “Merely Verbal Disputes,” Erkenntnis 79, no. 1 : 11–30, https://doi.org/10.1007/s10670-013-9443-6. [19] Steven Crowell, “Existentialism,” in The Stanford Encyclopedia of Philosophy, ed. Edward N. Zalta, Summer 2020, https://plato.stanford.edu/archives/sum2020/entries/existentialism/; Anita Avramides, “Other Minds,” in The Stanford Encyclopedia of Philosophy, ed. Edward N. Zalta, Winter 2020, https://plato.stanford.edu/archives/win2020/entries/other-minds/. [20] Martin Heidegger, Discourse on Thinking, Harper Torchbooks, 46. [21] Heidegger, 46. [22] Heidegger, 45. [23] Nick Zangwill, “Aesthetic Judgment,” in The Stanford Encyclopedia of Philosophy, ed. Edward N. Zalta, Winter 2021, https://plato.stanford.edu/archives/win2021/entries/aesthetic-judgment/. [24] Yuriko Saito, “Aesthetics of the Everyday,” in The Stanford Encyclopedia of Philosophy, ed. Edward N. Zalta, Spring 2021, https://plato.stanford.edu/archives/spr2021/entries/aesthetics-of-everyday/. [25] O’Brien, “Medical Ethics as Taught and as Practiced,” 112. [26] Farmer and Campos, “Rethinking Medical Ethics,” 20. (shrink)

The organ shortage is commonly presented as having a clear solution, increase the number of organs donated and the problem will be solved. In the light of the Northern Ireland Assembly’s consultation on moving to an opt-out organ donor register this article focusses on the social factors and complexities which impact strongly on both the supply of, and demand for, transplantable organs. Judging by the experience of other countries presumed consent systems may or may not increase donations but have not (...) met demand. Donation rates have risen considerably in all parts of the UK recently but there is also an increasing demand for organs. Looking at international donation rates and attitudes, future demand for organs and education on donation, the question is whether the organ shortage could ever be met. The increase in longevity, in rates of diabetes and obesity and in alcohol related liver disease all contribute both to increased demand for transplants, and re-transplants, and a reduction in the number of usable organs. It is unlikely that demand could ever be met, since, if supply was unlimited, the focus would move to financial resources and competing demands on the health care budget in a publicly funded health system. These factors point to the need to focus on ways of reducing, or at least stabilizing, demand where lifestyle factors contribute to the underlying disease. (shrink)

Background: Allocation of scarce organs for transplantation is ethically challenging. Artificial intelligence (AI) has been proposed to assist in liver allocation, however the ethics of this remains unexplored and the view of the public unknown. The aim of this paper was to assess public attitudes on whether AI should be used in liver allocation and how it should be implemented. Methods: We first introduce some potential ethical issues concerning AI in liver allocation, before analysing a pilot survey (...) including online responses from 172 UK laypeople, recruited through Prolific Academic. Findings: Most participants found AI in liver allocation acceptable (69.2%) and would not be less likely to donate their organs if AI was used in allocation (72.7%). Respondents thought AI was more likely to be consistent and less biased compared to humans, although were concerned about the “dehumanisation of healthcare” and whether AI could consider important nuances in allocation decisions. Participants valued accuracy, impartiality, and consistency in a decision-maker, more than interpretability and empathy. Respondents were split on whether AI should be trained on previous decisions or programmed with specific objectives. Whether allocation decisions were made by transplant committee or AI, participants valued consideration of urgency, survival likelihood, life years gained, age, future medication compliance, quality of life, future alcohol use and past alcohol use. On the other hand, the majority thought the following factors were not relevant to prioritisation: past crime, future crime, future societal contribution, social disadvantage, and gender. Conclusions: There are good reasons to use AI in liver allocation, and our sample of participants appeared to support its use. If confirmed, this support would give democratic legitimacy to the use of AI in this context and reduce the risk that donation rates could be affected negatively. Our findings on specific ethical concerns also identify potential expectations and reservations laypeople have regarding AI in this area, which can inform how AI in liver allocation could be best implemented. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Experiences of the Live Organ Donor: Lessons Learned Pave the FutureDianne LaPointe RudowIntroductionThe experience of a live organ donor is multi–faceted and is as unique as each person who agrees to take a risk to save another. Factors include: type of organ donated (kidney vs. liver), relationship to the recipient (related—biological or non–biological vs. non–related), decision–making and motivation for donation, support systems available within and outside (...) of the transplant program, and outcomes of the donation for both recipient and donor. The variety of experiences is apparent in the narratives within this special issue. I want to thank the authors of each story for sharing their experiences of the live donation process. As difficult as it must have been to write, it was difficult for someone like me, a transplant professional who is a strong advocate for quality donor care, to hear. But with each success and failure of transplantation, we can learn in the hopes of improving things for the next.Despite the fact that the field of transplantation is over 50 years old and the first kidney donors were live donors, viewing the field of live donation as a subspecialty of transplantation is a new concept (LaPointe Rudow, 2011). Live donation is, in fact, as specialized as lung transplant, liver transplant, transplant infectious disease, and kidney transplant. All of those subspecialties have clinicians and researchers with expertise in the area. Live donation experts exist and teams of live donor professionals staff most transplant programs today. Additionally regulatory bodies, professional societies, and advocacy groups strive to improve the care of the live organ donor (Medicare Conditions of Participation, 2007; Organ Procurement and Transplant Network, 2011; National Kidney Foundation 2011). Many years have been spent perfecting the surgical procedure and refining the proper testing to ensure that donation is safe for the donor. Live donation is, however, more than a surgery; in recent years, transplant professionals acknowledge that the psychosocial impact of donation on donors, whether positive or negative, can be significant but it is not yet completely understood.Much debate has occurred as to the components of the psychosocial evaluation, length and type of follow up, and the role of the independent live donor advocate (Amsterdam Forum, 2005; Ommen et al. 2011; Pruett et. al. 2006; Schroder et. al. 2008; Simpson & Pomfret 2012). The ethical concepts of paternalism and autonomy are in tension as we attempt to justify live donation. Perhaps nowhere else is ethical deliberation more vigorous than in the debate regarding whether informed consent for live donation is attainable, driven largely by the plight of the patient and the consequent vulnerability of the donor in an effort to help the patient. These quandaries are illustrated in the compelling narratives of this special issue. [End Page 45]Narrative ThemesBased on an analysis of the narratives, I will present a series of dominant themes that emerged from the stories; these will be exemplified by illustrative quotations from the live donor’s narratives.Live Donation has Psychological Effects on the DonorThere are many psychological effects of live donation both pre–and post–donation. The narratives describe feelings such as “I felt like a hero,” “feelings of anxiety, anger and ambivalence,” “it’s the best thing I ever did,” “I would do it all over again,” “a sense of loss,” and feelings of “suicidal thoughts.” The dichotomy of feelings expressed demonstrates the uniqueness of the live donor experience. One donor has nothing but good things to report regarding his or her experience while another feels lasting ill emotional affects requiring ongoing counseling even though the recipient has done well.Pre–donation psychological issuesTraditionally, the psychosocial evaluation explores the pre–donation emotional and family stressors to ensure that there are no issues or underlying psychiatric disorders that will make donation high risk for psychological complications. All donors writing the narratives were found to be suitable donors. That being said, there is no standardized approach to the psychological evaluation. Organ Procurement and Transplant Network (OPTN)/United Network for Organ Sharing (UNOS) (Organ Procurement and Transplant Network, 2011) have policies and guidelines and the Centers for Medicare Conditions of Participation (COP) (Medicare Conditions of... (shrink)

Purpose This paper presents an ethnographic study of gamete donation in Latvia. The aim of the study is to describe and analyse the practice of applying responsibility in gamete donation cases from the perspective of anthropology and ethics. Methods We performed thirty semi-structured interviews with laypeople and five focus group discussions among adolescents. The third source of data was media analysis: 57 articles discussing assisted reproduction in Latvian electronic popular media as well as internet discussions among ART participants. (...) The data were processed using Atlas.ti. Results The data showed that the situation of ART responsibility is formulated through defining one’s relationship to the gametes, to the nation and the relationship between parent and child. Conclusions The practice of gamete donation does not create new responsibilities but uses already existing relations in a situation marked by new knowledge. Relationships among ART users, donors and physicians often result in an imbalance of responsibility sharing. The framework of relational ethics is one possible way to change the practice of balancing and sharing responsibility in ART applications. (shrink)

This paper contributes to the growing line of thought in bioethics that respect for autonomy should not be equated to the facilitation of individualistic self determination through standard requirements of informed consent in all healthcare contexts. The paper describes how in the context of donation for living related liver transplantation (LRLT) meaningful, responsible decision making is often embedded within family processes and its negotiation. We suggest that good donor risk communication in families promote “conscientious autonomy” and “reflective trust”. (...) From this, the paper offers the suggestion that transplant teams and other relevant professionals have to broaden their role and responsibility for risk communication beyond proper disclosure by addressing the impact of varied psychosocial conditions on risk interpretation and assessment for potential donors and family stakeholders. In conclusion, we suggest further research questions on how professional responsibility and role-taking in risk communication should be morally understood. (shrink)

The aim of our research is to explore how Alzheimer’s disease and dementia are represented in the Slovak media. Data consisted of text documents from the Newton media database. Search criteria included TV, radio, print and web sources that mentioned the words “Alzheimer” and “dementia” between 2015 and 2018. A thematic discourse analysis was applied in order to identify the themes and their mutual semantic relations. The analysis was focused primarily on the headlines (n = 227). The results (...) show that the biomedical perspective currently dominates at the expense of a socio-psychological one. Persons with Alzheimer’s disease and dementia are represented as tragic cases and victims of a cruel disease. Responsibility for care and prevention is individualized. Our findings suggest that a new perspective is needed. Such an approach should recognize the dignity and humanity of persons with Alzheimer’s disease and dementia despite their cognitive deficits and respect their socio-psychological needs. (shrink)

Here I critique the approach often seen in bioethics, termed "Chicken Little bioethics," which emphasizes only the potential risks of novel therapies, using fecal microbiota transplant (FMT) as a case study. I argue that, instead of cataloging hypothetical risks, bioethicists should focus on establishing an ethical framework for FMT based on justice, beneficence, nonmaleficence, and autonomy. The essay advocates for empirical risk-benefit analysis through initiatives like the FMT registry, which tracks patient outcomes to better assess the actual risks and benefits (...) compared to antibiotic alternatives. Additionally, I address challenges related to informed consent, donor selection, and access to FMT, underscoring the need for balanced policies that consider both patient safety and the equitable availability of this promising therapy. In the end, I call for a regulatory approach that fosters responsible innovation while allowing FMT and similar bacteriotherapies to be integrated safely and effectively into medical practice. (shrink)

Contexte : L’ensemble des troubles causés par l’alcoolisation fœtale (ETCAF), un diagnostic complexe qui comprend une vaste gamme de troubles neurodéveloppementaux, résulte de l’exposition à l’alcool dans l’utérus. L’ETCAF demeure mal compris par les Canadiens, ce qui pourrait contribuer à la stigmatisation dont souffrent les personnes atteintes d’ETCAF et les femmes qui consomment de l’alcool pendant leur grossesse. Méthodes : Pour mieux comprendre comment l’information sur l’ETCAF est présentée dans la sphère publique, nous avons analysé le contenu de 286 articles (...) tirés de dix grands journaux canadiens de langue anglaise (2002-2015). Nous avons utilisé le codage inductif pour établir une grille de codage à partir des données, puis nous avons appliqué de façon itérative des codes identifiés sur l’échantillon, en vérifiant la fiabilité intercodeurs. Résultats : Nous avons identifié six grands thèmes liés au contenu cliniques et scientifiques des médias : 1) prévalence de l‘ETCAF et de la consommation d’alcool chez les femmes ; 2) recherche en lien avec l’ETCAF ; 3) diagnostic d’ETCAF ; 4) traitement de l’ETCAF et de l’abus de substances par les mères ; 5) incapacités primaires associés à l’ETCAF ; et 6) effets de l’alcool pendant la grossesse. Discussion : Dans le cadre de ces six thèmes, nous examinons trois types d’exagération et de fausse représentation qui ont des conséquences sur le plan éthique : 1) l’exagération des taux d’ETCAF dans les communautés autochtones ; 2) la contradiction entre les articles sur les effets de l’exposition prénatale à l’alcool ; et 3) l’information scientifiquement exacte qui néglige le contexte social de la consommation et de l’abus d’alcool par les femmes. Respectivement, ces représentations pourraient mener à des croyances stéréotypées préjudiciables au sujet des peuples autochtones, pourraient créer de la confusion quant aux choix sains pendant la grossesse et risqueraient d’enflammer inutilement les débats sur des questions délicates concernant les choix des femmes. (shrink)

ABSTRACT A number of philosophers have argued that alcoholics should receive lower priority for liver transplantations because they are morally responsible for their medical conditions. In this paper, I argue that this conclusion is false. Moral responsibility should not be used as a criterion for the allocation of medical resources. The reason I advance goes further than the technical problem of assessing moral responsibility. The deeper problem is that using moral responsibility as an allocation criterion undermines the functioning of (...) medicine. (shrink)

Dysregulation of lipid metabolism is a commonly observed feature associated with metabolic syndrome and leads to the development of negative health outcomes such as obesity, diabetes mellitus, non‐alcoholic fatty liver disease, or atherosclerosis. Time‐restricted feeding/eating (TRF/TRE), an emerging dietary intervention, has been shown to promote pleiotropic health benefits including the alteration of diurnal expression of genes associated with lipid metabolism, as well as levels of lipid species. Although TRF likely induces a response in multiple organs leading to the modulation (...) of lipid metabolism, a majority of the studies related to TRF effects on lipids have focused only on individual tissues, and furthermore there is a lack of insight into potential underlying mechanisms. In this review, we summarize the current insights regarding TRF effects on lipid metabolism and the potential mechanisms in adipose tissue, liver, skeletal muscle, and heart, and conclude by outlining possible avenues for future exploration. (shrink)

Is it possible to invoke the use of moral responsibility as part of the selection criteria in the allocation of livers for transplant? Criticism has been applied to the difficulties inherent in including such a criterion and also the effect that employing such a judgement might have upon the relationship between the physician and patient. However, these criticisms rely on speculation and conjecture and do not relate to all the arguments put forward in favour of applying moral responsibility. None of (...) the present arguments against using moral responsibility in the allocation of livers for transplant are good enough to warrant its dismissal. (shrink)

The scarcity of livers available for transplants forces tough choices upon us. Lives for those not receiving a transplant are likely to be short. One large group of potential recipients needs a new liver because of alcohol consumption, while others suffer for reasons unrelated to their own behaviour. Should the former group receive lower priority when scarce livers are allocated? This discussion connects with one of the most pertinent issues in contemporary political philosophy; the role of personal responsibility (...) in distributive justice. One prominent theory of distributive justice, luck egalitarianism, assesses distributions as just if, and only if, people's relative positions reflect their exercises of responsibility. There is a principled luck egalitarian case for giving lower priority to those who are responsible for their need. Compared to the existing literature favouring such differentiation, luck egalitarianism provides a clearer rationale of fairness, acknowledges the need for individual assessments of responsibility, and requires initiatives both inside and outside of the allocation systems aimed at mitigating the influence from social circumstances. Furthermore, the concrete policies that luck egalitarians can recommend are neither too harsh on those who make imprudent choices nor excessively intrusive towards those whose exercises of responsibility are assessed. (shrink)

Allocating scarce organs to transplant candidates is only one stage in the long process of organ transplantation. Before being listed, all candidates must undergo a rigorous assessment by a multidisciplinary transplant team. The Department of Health and NHS Blood and Transplant (NHSBT) are responsible for the development of detailed strategies to ensure a fair and objective assessment experience for all transplant candidates. Difficulties arise when particularly vulnerable candidates, such as candidates with psychiatric illnesses, are assessed. NHSBT has already developed unique (...) assessment guidelines for alcoholic and substance-abusing liver transplant candidates to allow for a more comprehensive evaluation, but candidates with psychiatric illnesses are still assessed against general criteria. Should these candidates be assessed against their own criteria? On what clinical grounds do transplant teams justify excluding such candidates from transplantation? Is redress available for candidates who feel they have been unfairly refused a liver transplant simply because of their psychiatric illness? This essay will critically examine the provisions published by the Department of Health and NHSBT for the assessment of liver transplant candidates with psychiatric illnesses, and will provide a commentary as to whether enough is being done to protect these particularly vulnerable candidates from inconsistent assessment decisions. (shrink)

As innovations in the field of vascular composite allotransplantation (VCA) progress, whole-eye transplantation (WET) is poised to transition from non-human mammalian models to living human recipients. Present treatment options for vision loss are generally considered suboptimal, and attendant concerns ranging from aesthetics and prosthesis maintenance to social stigma may be mitigated by WET. Potential benefits to WET recipients may also include partial vision restoration, psychosocial benefits related to identity and social integration, improvements in physical comfort and function, and (...) reduced surgical risk associated with a biologic eye compared to a prosthesis. Perioperative and postoperative risks of WET are expected to be comparable to those of facial transplantation (FT), and may be similarly mitigated by immunosuppressive protocols, adequate psychosocial support, and a thorough selection process for both the recipient and donor. To minimize the risks associated with immunosuppressive medications, the first attempts in human recipients will likely be performed in conjunction with a FT. If first-in-human attempts at combined FT-WET prove successful and the biologic eye survives, this opens the door for further advancement in the field of vision restoration by means of a viable surgical option. This analysis integrates recent innovations in WET research with the existing discourse on the ethics of surgical innovation and offers preliminary guidance to VCA programs considering undertaking WET in human recipients. (shrink)

Liver transplantation is the treatment of choice for many forms of liver disease. Unfortunately, the scarcity of cadaveric donor livers limits the availability of this technique. To improve the availability of liver transplantation, surgeons have developed the capability of removing a portion of liver from a live donor and transplanting it into a recipient. A few liver transplants using living donors have been performed worldwide.Our purpose was to analyze the ethics of liver transplants using (...) living donors and to propose guidelines for the procedure before it was introduced in the United States. We used a process of research ethics consultation that involves a collaboration between clinical investigators and clinical ethicists. We concluded that it was ethically appropriate to perform liver transplantation using living donors in a small series of patients on a trial basis, and we published our ethical guidelines in a medical journal before the procedure was introduced. We recommend this prospective, public approach for the introduction of other innovative therapies in medicine and surgery. (shrink)

Background Our objective was to evaluate whether the description of a machine learning (ML) app or brain imaging technology to predict the onset of schizophrenia or alcohol use disorder (AUD) influences healthcare professionals’ judgments of stigma, empathy, and compassion. Methods We randomized healthcare professionals (N = 310) to one vignette about a person whose clinician seeks to predict schizophrenia or an AUD, using a ML app, brain imaging, or a psychosocial assessment. Participants used scales to measure their judgments (...) of stigma, empathy, and compassion. Results Participants randomized to the ML vignette endorsed less anger and more fear relative to the psychosocial vignette, and the brain imaging vignette elicited higher pity ratings. The brain imaging and ML vignettes evoked lower personal responsibility judgments compared to the psychosocial vignette. Physicians and nurses reported less empathy than clinical psychologists. Conclusions The use of predictive technologies may reinforce essentialist views about mental health and substance use that may increase specific aspects of stigma and reduce others. (shrink)

Purpose Although the term “responsibility” plays a central role in bioethics and public health, its meaning and implications are often unclear. This paper defends the importance of a more systematic conception of responsibility to improve moral philosophical as well as descriptive analysis. Methods We start with a formal analysis of the relational conception of responsibility and its meta-ethical presuppositions. In a brief historical overview, we compare global-collective, professional, personal, and social responsibility. The value of our analytical matrix is illustrated by (...) sorting out the plurality of responsibility models in three cases (organ transplantation, advance directives, and genetic testing). Results Responsibility is a relational term involving at least seven relata. The analysis of the relata allows distinguishing between individual versus collective agency, retrospective versus prospective direction, and liability versus power relations. Various bioethical ambiguities result from insufficient, implicit, or inappropriate ascriptions of responsibility. Conclusions A systematic conception of responsibility is an important tool for bioethical reflection. It allows an in-depth understanding and critique of moral claims on a meta-ethical level without presuming one particular normative approach. Considering the concept of responsibility can also help to complement the current bioethical focus on individual autonomy by including the perspectives of other actors, such as family members or social groups. (shrink)

Human uterus transplantation (UTx)—the most radical and experimental of all current forms of assisted reproduction—gives rise to a range of complex ethical questions, including those related to individual safety, risk, and informed consent. I have argued elsewhere that the wider social impacts and implications of UTx provision must form part of a comprehensive ethical analysis. My socio‐moral critique of UTx provision has been responded to with a number of defences of possible public funding of UTx. In this paper I (...) examine a select number of those defences. These include: that UTx provision would address harms and needs that already exist and as such have priority; that UTx provision is fully compatible with the needed reform of the procreative context in which it would be offered; that UTx provision would not necessarily involve legitimation or endorsement of what are widely agreed to be problematic pronatalist or geneticist norms; and that UTx provision is required as a matter of justice and consistency with other practices. Importantly, defenders are not proposing a ceteris paribus justification of UTx provision; nor do my responses to their arguments represent a comprehensive opposition to UTx. Rather, my more limited purpose here is to show that whatever other defences may be given of publicly funded UTx provision, those considered here do not ultimately succeed and therefore do not allay the concerns underpinning the original socio‐moral critique. (shrink)

The phenomenon and implications of stigma have been recognized across many contexts and in relation to many discrete issues or conditions. The notion of spatial stigma has been developed within stigma literature, although the importance and relevance of spatial stigma for rural places and rural people have been largely neglected. This is the case even within fields of inquiry like public and rural health, which are expansively tasked with addressing the socio-structural drivers of health inequalities. In (...) this paper, we argue that developing a better understanding of rural place stigma is critical for addressing contemporary patterns of spatial injustice and health inequalities affecting rural communities globally. Drawing on international literature and examples from the reported experiences of rurally living Australians and news and other media, we present an analysis highlighting the power in rural place stigma. In doing so, we build a case for the relevance and importance of interrogating rural place stigma, especially in the fields of public and rural health, for changing the conditions within—and the broader positioning of—the rural in the public and political landscapes. (shrink)

Kidney donation by young children and the mentally retarded has been supported by court decisions, arguments based on obligations inherent in family relationships, an array of contextual factors, and the principle of beneficence. These justifications for taking organs from people who cannot protect themselves are problematic and must be weighed against our obligation to protect the vulnerable. A compromise solution is presented that strongly protects young children and the mentally retarded but does not abdicate all responsibility to relieve suffering. Guidelines (...) are proposed that prohibit the retrieval of kidneys from young children and the mentally retarded but permit one exception. They would allow retrieval of a kidney when the consequence to a first order relative with whom the donor has a meaningful and valuable relationship is otherwise imminent death. This would be done in accordance with additional guidelines that minimize harm to the donor. Since most patients with end stage renal disease can be maintained on dialysis the need for a kidney to prevent death should be an uncommon occurrence. This compromise is proposed as a solution to a dilemma that exists because two ethical principles are in conflict and one cannot be honored without violating the other. (shrink)

The COVID‐19 pandemic has infected millions around the world. Governments initially responded by requiring businesses to close and citizens to self‐isolate, as well as funding vaccine research and implementing a range of technologies to monitor and limit the spread of the disease. This article considers the use of smartphone metadata and Bluetooth applications for public health surveillance purposes in relation to COVID‐19. It undertakes ethical analysis of these measures, particularly in relation to collective moral responsibility, considering whether citizens ought, or (...) should be compelled, to comply with government measures. (shrink)

The rapid expansion of computational tools and of data science methods in healthcare has, undoubtedly, raised a whole new set of bioethical challenges. As Laacke and colleagues rightly note,...

Despite the growing significance of corporate social responsibility (CSR) in corporate public relations (PR) strategies, there has been a paucity of comprehensive reviews of the extant CSR literature within the PR discipline. The aim of this study is to investigate the relationship between the concept of CSR and the discipline of PR through a hybrid concept-discipline-focused review. We employed latent dirichlet allocation (LDA) via topic modeling as a novel approach for intellectual structure analysis. The dataset for this review comprised 246 (...) peer-reviewed articles on CSR published between 1975 and 2022. Based on the LDA results, five topics were identified and discussed: the political CSR stream, social media-oriented CSR, consumer-oriented CSR, CSR reporting, and business-oriented CSR. Additionally, implications for both academic and practical applications were drawn, along with recommendations for future research. This study is pioneering in its contribution to the literature and practice of CSR-related PR research, offering insights into the intellectual structures and trends within this field. (shrink)

Most of the discussion in bioethics and health policy concerning social responsibility for health has focused on society’s obligation to provide access to healthcare. While ensuring access to healthcare is an important social responsibility, societies can promote health in many other ways, such as through sanitation, pollution control, food and drug safety, health education, disease surveillance, urban planning and occupational health. Greater attention should be paid to strategies for health promotion other than access to healthcare, such as environmental and public (...) health and health research.Lifestyle plays a major role in most of the illnesses in industrialised nations.1 Six of the 10 leading factors contributing to the global burden of disease are lifestyle related: unsafe sex, high blood pressure, tobacco use, alcohol use, high cholesterol and obesity.2 Lifestyle-related illnesses also contribute to the rising costs of healthcare. Spending on healthcare accounts for about 16% of the gross domestic product in the USA, or US$1.9 trillion.3 Although smoking has declined steadily there since the 1960s, smoking-related medical expenses are still about US$75.5 billion per year.4 Obesity, which has been climbing in the past two decades, accounts for about US$75 billion in healthcare costs there each year.5 Alcoholism and drug addiction in the USA account for annual healthcare costs of about US$22.5 billion and US$12 billion, respectively.6,7 Federal government spending on healthcare relating to HIV/AIDS is over US$13 billion per year.8Given the well-documented relationship between lifestyle, disease burden and healthcare costs, it makes economic and medical sense to hold individuals morally responsible for their health-related choices. While this view has a great deal of intuitive appeal, it also faces numerous objections.9–12 First, holding individuals entirely responsible for their own health conflicts with medicine’s obligation to treat the sick and society’s obligation …. (shrink)

Stigmatization associated with the coronavirus disease 2019 is expected to be a complex issue and to extend into the later phases of the pandemic, which impairs social cohesion and relevant individuals' well-being. Identifying contributing factors and learning their roles in the stigmatization process may help tackle the problem. This study quantitatively assessed the severity of stigmatization against three different groups of people: people from major COVID-19 outbreak sites, those who had been quarantined, and healthcare workers; explored the factors associated with (...) stigmatization within the frameworks of self-categorization theory and core social motives; and proposed solutions to resolve stigma. The cross-sectional online survey was carried out between April 21 and May 7, 2020, using a convenience sample, which yielded 1,388 valid responses. Employing data analysis methods like multivariate linear regression and moderation analysis, this study yields some main findings: those from major COVID-19 outbreak sites received the highest level of stigma; factors most closely associated with stigmatization, in descending order, are objectification and epidemic proximity in an autonomic aspect and fear of contracting COVID-19 in a controllable aspect; and superordinate categorization is a buffering moderator in objectification–stigmatization relationship. These findings are important for further understanding COVID-19-related stigma, and they can be utilized to develop strategies to fight against relevant discrimination and bias. Specifically, reinforcing superordinate categorization by cultivating common in-group identity, such as volunteering and donating for containment of the pandemic, could reduce objectification and, thus, alleviate stigma. (shrink)

Information, as well as freedom of expression and freedom of the media are essential for democratic society and fundamental characteristic of modern states. The year 2020 will be remembered as a year of pandemic caused from Covid-19 (coronavirus) and a year of response to unexpected challenge that the spread of the virus caused. In the times of pandemic and any type of crisis, the media always plays a key role in informing the public all over the Globe. This (...) paper aims to make theoretical descriptive research and analysis of the influence of coronavirus on news consumption, the role of media in communication and presentation of important developments during pandemic. The authors present an overview of the media system and the latest developments in the EU in preventing fake news related to the pandemic. We conclude that media plays key role in informing the citizens during pandemic and therefore they have increased responsibility in providing reliable information. At the same time, since the beginning of the Covid-19 pandemic, the media have been challenged with parallel outbreaks of disinformation and misinformation about the virus, ranging from fake coronavirus cures, false claims and harmful health advice to wild conspiracy theories. Disinformation can in turn speed up the spread of disease, hinder effective public health responses, as well as create confusion, fear and distrust. We highlight the fundamental function of creating awareness regarding the topic based on facts, and the need of media for preventing panic and fostering people's understanding by ‘checking the source and information twice’. (shrink)

This paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups in relation to two recent upheavals: the critique of social stigmatization and biomedical research focusing on prediction. Based on twenty-six semi-structured interviews conducted in 2016–2017 with members, service recipients, and board representatives of POs in Germany and Israel, a comparative analysis was conducted, based on a grounded theory approach, to detect emerging topics within and across the POs and across national contexts. We identified a heterogeneous landscape, (...) with the only Israeli PO focusing strongly on caretakers, whereas in Germany several POs claim to represent this patient collective. Shared aims of all POs were fighting social stigma, balancing the loss of patients’ individual autonomy, and the well-being of caretakers. By highlighting the emergence of new groups of dementia self-advocacy against the more traditional advocacy by others, this study highlights how advocacy and representation in the context of AD are embedded in the discursive context of stigmatization and revised disease conception. Future developments in early diagnosis and prediction of dementia, with more affected people likely to conduct dementia self-advocacy, might challenge existing representation structures even more. (shrink)

Hepatocellular carcinoma represents the third leading cause of cancer-related death. Because HCC is multicentric with time, excluding the few transplanted patients, sooner or later it becomes untreatable with loco-regional therapies and, until some years ago, it was not responsive to systemic therapies. In 2005 a randomized trial indicated the efficacy of a product containing stem cell differentiation stage factors taken from zebrafish embryos during the stage in which the totipotent stem cells are differentiating into the pluripotent adult stem cells. (...) In such a trial the patients, with “intermediate” and “advanced” HCC according to Barcelona Clinic Liver Cancer/American Association for the Study of Liver Diseases guidelines, presented benefit in terms of performance status and objective tumoral response, with some cases of complete response, that is, sustained disappearance of the neoplastic areas or blood supply therein, accompanied by normalization of alpha-fetoprotein... (shrink)

Objectives: The introduction of the living donation in organ transplantation introduces important new psychological conflicts and ethical questions in the transplantation process. Operation related risks, as well as dependencies in the family structure, generate considerable pressure on potential donors. The aim of the study was to reconstruct the determinants of willingness to donate before transplantation.Methods: Evaluation of 20 taped and transcribed interviews oriented to current approaches in qualitative interview research. The approach used is based on grounded theory, qualitative content (...) analysis, and the concept of the ideal type.Results: Before surgery, “openly motivated” donors push for an operation, leaving no room for ambivalence in the evaluation process. They idealise the relationship with the recipient, and link their donation with the individual—partly in subconscious expectations and wishes. In contrast, “openly ambivalent” donors formulate their anxieties and express arguments against donation.Conclusions: Statements that claim ambivalence towards donation or utterance of arguments against donation indicate earlier coercion. Before transplantation, potential donors should have the opportunity to discuss their emotional situation to help their decision making process. (shrink)

Free will has been the object of debate in the context of addiction given that addiction could compromise an individual’s ability to choose freely between alternative courses of action. Proponents of the brain-disease model of addiction have argued that a neuroscience perspective on addiction reduces the attribution of free will because it relocates the cause of the disorder to the brain rather than to the person, thereby diminishing the blame attributed to the person with an addiction. Others have worried that (...) such displacement of free will attribution would make the person with a drug addiction less responsible. Using the paradigmatic literature on the seductive allure of neuroscience explanations, we tested whether neuroscience information diminishes attributions of free will in the context of addiction and whether respondent characteristics influence these attributions and modulate the effect of neuroscience information. We performed a large-scale, web-based experiment with 2,378 German participants to explore how attributions of free will in the context of addiction to either alcohol or cocaine are affected by: (1) a text with a neurobiological explanation of addiction, (2) a neuroimage showing effects of addiction on the brain, and (3) a combination of a text and a neuroimage, in comparison to a control group that received no information. Belief in free will was measured using the FAD-Plus scale and was, subsequent to factor analysis, separated into two factors: responsibility and volition. The investigated respondent characteristics included gender, age, education, self-reported knowledge of neuroscience, substance-use disorder (SUD), and having a friend with SUD. We found that attributions of volition (in the cocaine-subsample) were reduced in the text and neuroimage-treatment compared to the control group. However, respondent characteristics such as education and self-reported knowledge of neuroscience were associated with lower attributions of responsibility for both substances, and education was associated with lower attribution of volition for the alcohol sub-sample. Interaction analyses showed that knowledge of neuroscience was found to generally decrease attribution of responsibility. Further research on attribution of free will should consider the effects of context and respondent characteristics, which appeared surprisingly larger than those induced by experimental treatments. (shrink)

The debate around lockdowns as a response to the recent pandemic is typically framed in terms of a tension between freedom and health. However, on some views, protection of health or reduction of virus‐related risks can also contribute to freedom. Therefore, there might be no tension between freedom and health in public health restrictions. I argue that such views fail to appreciate the different understandings of freedom that are involved in the trade‐off between freedom and health. Grasping these distinctions (...) would allow to appreciate why different people give more weight to different aspects of limitations of freedom, including whether certain options are made simply risky or impossible, whether limitations of freedom are posed intentionally or happen accidentally, whether risks are beyond a threshold of acceptability, and who gets to decide that. I provide a conceptual analysis of the relationship between different types of freedom, public health policies, viruses and diseases. As I argue, identifying what freedom‐based reasons count for and against different types of public health restrictions requires distinguishing between viruses and diseases, between lockdowns and other types of restrictive policies, and between risks posed by viruses and threats of penalties involved by restrictive policies. (shrink)

BackgroundThis study aimed to translate the negative and positive items of the Psychological Consequences Questionnaire into German, to adapt this version to the context of screening for cirrhosis and fibrosis of the liver, and to test its psychometric properties.Materials and methodsThe three subscales were translated into German using a forward-backward translation method. Furthermore, we adapted the wording to the context of liver diseases. In sum, the PCQ comprises twelve negative items and ten positive items. We tested the acceptability, (...) distribution properties, internal consistency, scale structure, and the convergent validity using an analysis sample of 443 patients who were screened for cirrhosis or fibrosis of the liver.ResultsWe found low non-response and non-unique answer rates on the PCQ items in general. However, positive items had higher non-response rates. All items showed strong floor effects. McDonald’s Omega was high for both the negative and the positive PCQ scale, as well as for the total PCQ scale. Confirmatory factor analysis could reproduce the three dimensions that the PCQ intends to measure. However, it suggests not summing up a total PCQ score and instead treat the subscales separately considering a higher order overall construct. Convergent validity with the short form of the Spielberger State-Trait Anxiety Inventory was acceptable.ConclusionOverall, our study results report a successful adaptation of the German PCQ with good performance in terms of acceptability, internal consistency, scale structure, and convergent validity. Floor-effects limit the content validity of the PCQ, which needs to be addressed in future research. However, the German version of the PCQ is a useful measurement for both negative and positive screening consequences - even in a non-cancer setting. (shrink)