As nursing professionals, we believe access to healthcare is fundamental to health and that it is a determinant of health. Therefore, evidence suggesting access to healthcare is problematic for many Indigenous peoples is concerning. While biomedical perspectives underlie our current understanding of access, considering alternate perspectives could expand our awareness of and ability to address this issue. In this paper, we critique how access to healthcare is understood through a biomedical lens, how a (...) postcolonial theoretical lens can extend that understanding, and the subsequent implications this alternative view raises for the nursing profession. Drawing on peer‐reviewed published and gray literature concerning healthcare access and Indigenous peoples to inform this critique, we focus on the underlying theoretical lens shaping our current understanding of access. A postcolonial analysis provides a way of understanding healthcare as a social space and social relationship, presenting a unique perspective on access to healthcare. The novelty of this finding is of particular importance for the profession of nursing, as we are well situated to influence these social aspects, improving access to healthcare services broadly, and among Indigenous peoples specifically. (shrink)

Health is higher on the international agenda than ever before, and improving the health of poor people is a central issue in development. Poor people suffer from far higher levels of ill health, mortality, and malnutrition than do those better off, and their inadequate health is one of the factors keeping them poor or for their being poor in the first place. Health is a crucially important economic asset, particularly for poor people. Their livelihoods depend on it. When poor people (...) become ill or injured, their entire household can become trapped in a downward spiral of lost income and high healthcare costs—a vicious circle of poverty and ill health. (shrink)

Luck egalitarianism provides a reason to object to conditionality in health incentive programmes in some cases when conditionality undermines political values such as solidarity or inclusiveness. This is the case with incentive programmes that aim to restrict access to essential healthcare services. Such programmes undermine solidarity. Yet, most people's lives are objectively worse, in one respect, in non-solidary societies, because solidarity contributes both instrumentally and directly to individuals' well-being. Because solidarity is non-excludable, undermining it will deprive both the (...) prudent and the imprudent citizens of its goods. Thereby, undermining solidarity can make prudent citizens worse off than they would have otherwise been, out of no fault or choice of their own, but rather as a result of somebody else's imprudent choice. This goes against the spirit of luck egalitarianism. Therefore (luck egalitarian) justice can require us to save the imprudent and avoid conditionality in access to essential healthcare services. (shrink)

Background Research shows that undocumented migrants have difficulties in accessing healthcare. Act 2013:407 came into force in 2013 and entitled undocumented migrants to healthcare that cannot be deferred. To date, studies about undocumented migrants’ access to care in Sweden and the impact of Act 2013:407 are sparse. Hence, the aim of this study was to describe professionals’ experiences of access to healthcare for undocumented migrants in Sweden and the impact of Act 2013:407. Methods A qualitative (...) design with semi-structured interviews was employed. Nine interviews were carried out in 2015 with nurses at two NGO healthcare centres for undocumented migrants – and an additional seven interviews in 2022 with staff at an NGO healthcare centre for undocumented migrants and personnel at a regional health and medical care administration. Interpretive description was used for the analyses. Ethical considerations Permission to carry out the study was obtained from managers at the participating NGOs and the regional health and medical care administration. Participants received verbal and written information about the study, and informed consent was obtained from all participants. Findings Six categories emerged from the analysis: Changes since the Act was introduced, General problems with healthcare access, Care for undocumented migrants – politics and social economy, Lack of knowledge, ‘Healthcare that cannot be deferred’ and Being an undocumented migrant. Conclusion Undocumented migrants’ social needs are as great as their needs for healthcare. Healthcare staff are burdened with healthcare cost considerations which affect their judgement of care provision and prioritization. Healthcare staff attitudes towards undocumented migrants affect their access to healthcare. Undocumented migrants in need of healthcare are especially vulnerable due to their legal status, being ill and the fear of being reported and deported. To assure undocumented migrants’ access to healthcare and maintain healthcare ethics, the only possible solution is to provide healthcare based on needs. (shrink)

Can anyone doubt that the Jewish tradition mandates universal access to healthcare? In a comprehensive and illuminating discussion, A.L. Mackler seems to have already said all that needs to be said. After aptly analyzing the principles of the traditional institutions and norms relating to tzedakah, Mackler proceeded to apply these traditions to the context of healthcare, concluding that.

In writing this paper I am reminded of a conference that I once attended. On that panel, the Jewish scholar spoke first. he began, and he gave a wonderful talk full of references to the legal rulings and stories of the Jewish tradition. Then the Catholic priest spoke. he began, and he gave a wonderful talk carefully attentive to the moral tradition of the Catholic Church. Finally, a Protestant spoke. he began, I didn't know whether to laugh or cry, but (...) now I find myself in a similar situation. (shrink)

My discussion is presented in three steps: The present position of the Catholic Church; why it is a relatively recent tradition; and the roots of the tradition.

The distribution of scarce healthcare resources is an increasingly important issue due to factors such as expensive ‘high tech’ medicine, longer life expectancies and the rising prevalence of chronic illness. Furthermore, in the current healthcare context lifestyle-related factors such as high blood pressure, tobacco use and obesity are believed to contribute significantly to the global burden of disease. As such, this paper focuses on an ongoing debate in the academic literature regarding the role of responsibility for illness in (...) healthcare resource allocation: should patients with self-caused illness receive lower priority in access to healthcare resources? This paper critically describes the lower priority debate's 12 key arguments and maps out their relationships. This analysis reveals that most arguments have been refuted and that the debate has stalled and remains unresolved. In conclusion, we suggest progression could be achieved by inviting multidisciplinary input from a range of stakeholders for the development of evidence-based critical evaluations of existing arguments and the development of novel arguments, including the outstanding rebuttals. (shrink)

This paper discusses the need to focus on the dignity of human participants as a legal and ethical basis for providing post-trial access to healthcare. Debate about post-trial benefits has mostly focused on access to products or interventions proven to be effective in clinical trials. However, such access may be modelled on a broad fair benefits framework that emphasises both collateral benefits and interventional products of research, instead of prescribed post-trial access alone. The wording of (...) the current version of the Declaration of Helsinki could in fact be interpreted to broaden the scope to include other collateral benefits by applying such a broad fair benefits framework. We argue that this possibility should be utilised by low and middle income countries’ health research ethics committees in order to ensure that research participants who enrol in clinical trials so as to receive medical care continue to access care after the trial is concluded, as befits their dignity. Although each LMIC has unique concerns, nonetheless there are common challenges based especially on emerging issues, such as post-trial access to healthcare. Accordingly, the South African perspective is used to draw lessons that can benefit other LMICs. (shrink)

Our commentary aims to show that the COVID-19 pandemic has amplified existing barriers to healthcare in England for ethnic minority and migrant women. We expose how the pandemic has affected the allocation of healthcare resources leading to the prioritisation of COVID-19 patients and suspending the equal access to healthcare services approach. We argue that we must look beyond this disruption in provision by examining existing barriers to access that have been amplified by the pandemic in (...) order to understand the poorer health outcomes for women in ethnic minority and migrant communities. The reflection focuses on racialised medical perceptions, gendered cultural norms including information barriers and stigma, and specific legal barriers. (shrink)

Pathology and laboratory medicine are a key component of a patient’s healthcare. From academic care centres, community hospitals, to clinics across the country, pathology data are a crucial component of patient care. But for much of the modern era, pathology and laboratory medicine have been absent from health policy conversations. Though select members in the field have advocated for an enhanced presence of these specialists in policy conversations, little work has been done to thoroughly evaluate the moral and ethical (...) obligations of the pathologist and the role they play in healthcare justice and access to care. In order to make any substantive improvements in access to care, pathology and laboratory medicine must have a seat at the table. Specifically, pathologists and laboratorians can assist in bringing about change through improving clinician test choice, continuing laboratory improvement programmes, promoting just advanced diagnostic distribution, triage testing and be good stewards of healthcare dollars, and recruiting a more robust laboratory workforce. In order to get to that point, much work has to be done in pathology education and the laboratory personnel training pipeline but there also needs to be adjustments at the system level to better involve this invaluable group of specialists in these policy conversations. (shrink)

Although scholars in bioethics usually consider the exclusion of migrants from basic healthcare as unjust, it remains unclear how health professionals should ethically deal with policies restrictin...

The current concern with reforming and regulating managed care under the general rubric of “patients' rights” has eclipsed the more fundamental need to legislate the human rights of those without adequate access to any healthcare. To characterize the regulatory activity as a “rights” movement inflates its moral dimension. The concept of “rights” carries a serious and powerful moral force that is currently inappropriately applied to the parochial concerns of a segment of the population privileged to have health insurance (...) coverage. By contrast, the language of “rights” refers to a high level of universality for the most rudimentary of human concerns. If there was a universal right to become a patient equal to other patients, a concept of patients' rights would have legitimacy. As it is, however, the central determinant of this “right” is how much the insurance policy costs and what is covered. To so diminish the meaning of “right” within the miasma of managed care is to lose sight of the real possibilities of applying a positive “right” to healthcare and, in the long run, is to diminish the ethics of healthcare. (shrink)

When research concludes, post-trial access to the trial intervention or standard healthcare can be crucial for participants who are ill such as those in resource-poor countries with inadequate healthcare, British participants testing ‘last-chance drugs’ unavailable on the National Health Service and underinsured US participants. Yet, many researchers are unclear about their obligations regarding the post-trial period, and many research ethics committees do not know what to require of researchers. Consequences include participants who reasonably expect but lack PTA (...) to the trial intervention, unplanned financial liabilities for NHS Trusts forced to fund this, negative press and potential to undermine public trust.1–3,iOne reason for the lack of clarity is controversy over whether and when participants should have access, after the study, to the study intervention. At one extreme is the view that continued access should be ensured when the intervention has benefited the participant or when it has proven safe and effective for the participant population, irrespective of the cost and burden of ensuring continued access. At the other extreme is the view that continued access need never be provided so long as non-availability of the study intervention post-trial was adequately disclosed when participants were invited to participate.6 There is also disagreement about when poststudy access to the study intervention should be considered beneficial for participants. The spectrum ranges from the view that the intervention should be regarded as beneficial for a proposed use only after the …. (shrink)

Any humane society needs a just and compassionate way to care for those who are sick, and should be vigilant in identifying and eliminating barriers that frustrate efforts to adequately care for the sick. Some current insurance underwriting practices constitute effective barriers to access to healthcare and serve to diminish the place of freedom and justice in our healthcare system.

The development of new effective but expensive medical treatments leads to discussions about whether and how such treatments should be funded in solidarity-based healthcare systems. Solidarity is often seen as an elusive concept; it appears to be used to refer to different sets of concerns, and its interrelations with the concept of justice are not well understood. This paper provides a conceptual analysis of the concept of solidarity as it is used in discussions on the allocation of healthcare (...) resources and the funding of expensive treatments. It contributes to the clarification of the concept of solidarity by identifying in the literature and discussing four uses of the concept: (1) assisting patients in need, (2) upholding the solidarity-based healthcare system, (3) willingness to contribute and (4) promoting equality. It distinguishes normative and descriptive uses of the concept and outlines the overlap and differences between solidarity and justice. Our analysis shows that the various uses of the concept of solidarity point to different, even conflicting, ethical stances on whether and how access to effective, expensive treatments should be provided. We conclude that the concept of solidarity has a role to play in discussions on the accessibility and funding of newly approved medical treatments. It requires, for instance, that healthcare policies promote and maintain both societal willingness to contribute to the care of others and the value of providing care to vulnerable patients through public funding. (shrink)

The development of new effective but expensive medical treatments leads to discussions about whether and how such treatments should be funded in solidarity-based healthcare systems. Solidarity is often seen as an elusive concept; it appears to be used to refer to different sets of concerns, and its interrelations with the concept of justice are not well understood. This paper provides a conceptual analysis of the concept of solidarity as it is used in discussions on the allocation of healthcare (...) resources and the funding of expensive treatments. It contributes to the clarification of the concept of solidarity by identifying in the literature and discussing four uses of the concept: (1) assisting patients in need, (2) upholding the solidarity-based healthcare system, (3) willingness to contribute and (4) promoting equality. It distinguishes normative and descriptive uses of the concept and outlines the overlap and differences between solidarity and justice. Our analysis shows that the various uses of the concept of solidarity point to different, even conflicting, ethical stances on whether and how access to effective, expensive treatments should be provided. We conclude that the concept of solidarity has a role to play in discussions on the accessibility and funding of newly approved medical treatments. It requires, for instance, that healthcare policies promote and maintain both societal willingness to contribute to the care of others and the value of providing care to vulnerable patients through public funding. (shrink)

In the Netherlands, access to healthcare has been guaranteed by social health insurance legislation. But since the introduction of the Health Insurance Act in the 1960s, the health insurance system has been in a state of flux. Numerous reforms have changed the system gradually, of which the latest is the introduction of a competitive health insurance scheme for the entire population.Cutting across the various reforms has, however, been the goal of access to healthcare services as defined (...) by international treaty law, including European Union law. In particular the leverage of Community law in strengthening the patient’s right to healthcare is remarkable. Since the European Court of Justice has accepted that healthcare should be considered as a service in terms of the EC Treaty, rights to healthcare have become inextricably linked with the free movement principles and are no longer restricted to the jurisdiction of the country of origin. (shrink)

Tertiary healthcare ethics (HCE) consultation occurs when an HCE consultant at a healthcare facility requests guidance from one or more senior HCE consultants who are not members of that facility’s HCE consultation service. Tertiary HCE consultants provide advanced HCE guidance and/or mentoring to facility (secondary) HCE consultants, mirroring healthcare consultation in clinical practice. In this article, we describe advantages and challenges of providing tertiary HCE consultation through a hub-and-spoke model administered by a national integrated HCE service.

In March 2020, the Portuguese Government issued a remarkable regulation by which irregular migrants who had previously started the regularization procedure were temporarily regularized and thus allowed full access to all social benefits, including healthcare. The Portuguese constitutional and legal framework is particularly generous regarding the right to healthcare to irregular migrants. Nevertheless, until now, several practical barriers prevented full access to healthcare services provided by the national health service, even in situations in which it (...) was legally granted. This decision is not only remarkable in light of the fulfilling of migrants’ rights to health, as imposed by international commitments assumed by, but also in view of the fight against COVID-19. The decision is grounded both on human rights and in public health reasons. The paper is divided in two main parts. In the first one, it analyzes national State obligations with regard to healthcare provision to migrants in irregular situation. In the second part, it analyzes the Portuguese solution, using this case study to discuss the possible mechanisms to comply with such obligations. (shrink)

When the cost-effectiveness of newly approved cancer treatments is insufficient or unclear, they may not (immediately) be eligible for reimbursement through basic health insurance in publicly funded healthcare systems. Patients may seek access to non-reimbursed treatment through other channels, including individual funding requests made to hospitals, health insurers, or pharmaceutical companies. Alternatively, they may try to pay out of pocket for non-reimbursed treatments. While currently little is known of these practices, they run counter to a deeply held egalitarian (...) ethos that is prevalent in many publicly funded healthcare systems. In this article, we investigate to what extent this ethos can be grounded in theories of justice, notably egalitarianism and prioritarianism. We argue that allowing out-of-pocket payments by patients themselves, in principle, is not unjust from the perspective of either of these theories, provided that it does not raise in-practice justice-based concerns, for instance by displacing more cost-effective care, to the detriment of other patients, or by failing to treat patients equally. In contrast, we conclude that the practice of making exceptions for individual patients by health insurers or healthcare providers does run counter to the justice-based requirements of equal treatment. (shrink)

Should involuntarily childless people have the same opportunities to access parenthood as those who are not involuntarily childless? In the context of assisted reproductive technologies, affirmative answers to this question are often cashed out in terms of positive rights, including rights to third-party reproduction. In this paper, we critically explore the scope and extent to which any such right would hold up morally. Ultimately, we argue for a departure away from positive parental rights. Instead, we argue that the state (...) has an imperfect duty to benefit involuntarily childless people in relation to their parental aspirations. (shrink)

The health care systems are fairly similar in theScandinavian countries. The exact details vary, but inall three countries the system is almost exclusivelypublicly funded through taxation, and most (or all)hospitals are also publicly owned and managed. Thecountries also have a fairly strong primary caresector (even though it varies between the countries),with family physicians to various degrees acting asgatekeepers to specialist services. In Denmark most ofthe GP services are free. For the patient in Norwayand Sweden there are out-of-pocket co-payments for GPconsultations, (...) with upper limits, but consultations forchildren are free. Hospital treatment is free inDenmark while the other countries use a system without-of-pocket co-payment. There is a very strongpublic commitment to access to high quality healthcare for all. Solidarity and equality form theideological basis for the Scandinavian welfare state.Means testing, for instance, has been widely rejectedin the Scandinavian countries on the grounds thatpublic services should not stigmatise any particulargroup. Solidarity also means devoting specialconsideration to the needs of those who have lesschance than others of making their voices heard orexercising their rights. Issues of limited access arenow, however, challenging the thinking about a healthcare system based on solidarity. (shrink)

The development of new methods in the field of prenatal testing leads to an expansion of information that needs to be provided to expectant mothers. The aim of this research is to explore opinions and attitudes of gynecologists in Germany, Poland and Russia towards access to prenatal testing and diagnostics in these countries. Semi-structured interviews were conducted with n = 18 gynecologists in Germany, Poland and Russia. The interviews were analyzed using the methods of content analysis and thematic analysis. (...) Visible in all three countries is a connection of prenatal medicine with the politically and socially contentious issue of pregnancy termination. Respondents in Poland and Russia concentrated on the topic of inadequate resources. Quality of information for expectant mothers is an important point in all three countries. Only in Germany was the issue of language barriers in communication raised. With regard to non-invasive prenatal testing (NIPT) respondents in Germany focused on the ethical issues of routinization of testing; in Poland and Russia they concentrated on fair access to NIPT. Challenges in all three countries arise from structural factors such as imprecise and prohibitive regulations, lack of resources or organization of healthcare services. These should be addressed on a political and medico-ethical level. (shrink)

Pulmonary rehabilitation has demonstrated patients’ physiological and psychosocial improvements, symptoms reduction and health-economic benefits whilst enhances the ability of the whole family to adjust to illness. However, PR remains highly inaccessible due to lack of awareness of its benefits, poor referral and availability mostly in hospitals. Novel models of PR delivery are needed to enhance its implementation while maintaining cost-efficiency. We aim to implement an innovative community-based PR programme and assess its cost-benefit. A 12-week community-based PR will be implemented in (...) primary healthcare centres where programmes are not available. Healthcare professionals will be trained. 73 patients with CRD and their caregivers will compose the experimental group. The control group will include dyads age- and disease-matched willing to collaborate in data collection but not in PR. Patients/family-centred outcomes will be dyspnoea, fatigue, cough and sputum, impact of the disease, emotional state, number of exacerbations, healthcare utilisation, health-related quality of life and family adaptability/cohesion. Other clinical outcomes will be peripheral and respiratory muscle strength, muscle thickness and cross sectional area, exercise capacity, balance and physical activity. Data will be collected at baseline, at 12 weeks, at 3- and 6-months post-PR. Changes in the outcome measures will be compared between groups, after multivariate adjustment for possible confounders, and effect sizes will be calculated. A cost-benefit analysis will be conducted. This study will enhance patients access to PR, by training healthcare professionals in the local primary healthcare centres to conduct such programmes and actively involving caregivers. The cost-benefit analysis of this intervention will provide an evidence-based insight into the economic benefit of community-based PR in chronic respiratory diseases. The trial was registered in the ClinicalTrials. gov U.S. National Library of Medicine, on 10th January, 2019. (shrink)

In June 2020, Gilead agreed to provide the USA with 500 000 doses of remdesivir—an antiviral drug which at that time was percieved to show promise in reducing the recovery time for patients with COVID-19. This quantity represented Gilead’s then full production capacity for July and 90% of its capacity for August and September. Similar deals are evident around access to proposed vaccines for COVID-19, and such deals are only likely to increase. These attempts to secure preferential access (...) to medicines and vaccines, so-called vaccine/treatment nationalism, jeopardise supplies of life-saving treatments and vaccines available elsewhere, and jeopardise global equitable distribution of such vaccines/treatments more generally. Much of the focus to date has been on States’ role in negotiating such deals. However, such developments also demonstrate the power patent holders have in controlling access to life-saving healthcare, determining who obtains access first and at what price. This article argues that the extent of control currently given to patent holders for COVID-19 must be questioned. This article demonstrates that patents have significant implications for healthcare acting as private governance tools over patented inventions. It is only by greater probing of patent holders’ role in delivering access to medicines, diagnostics and vaccines for COVID-19 that equitable global equitable access can be achieved. (shrink)

Today's clinical AIDS research is in trouble. Principal investigators are confronted with young and frequently highly knowledgeable patients. Many of these people with AIDS are often unwilling to adhere to the trial protocols. These PWAs believe they are ethically justified in breaching trial protocols because they do not consider themselves true volunteers in such trials. PWAs argue that they do not really volunteer because existing legislation prevents them from buying and using experimental drugs or from testing alternative treatment strategies. Their (...) only access to such agents is participation in clinical trials. (shrink)

People with disabilities are often denied equal access to organ transplantation despite long‐standing federal nondiscrimination mandates. Under the Americans with Disabilities Act and the Rehabilitation Act, people cannot be excluded from consideration for organ transplantation because of disability itself, or because of stereotypes or assumptions about the value or quality of life with a disability. Instead, decisions concerning whether an individual is a candidate for organ transplantation should be based on an individualized assessment of the patient and on objective (...) medical evidence. Recent legal developments underscore these basic guarantees and signal a new focus on the policies, practices, and attitudes that continue to compromise equal access to life‐saving organ transplants for people with disabilities. (shrink)

As the authors of the Millennium Development Goals Gap Task Force have noted, access to medicines is a vital component of realizing the human right to health. Without reliable access to drugs, the highest attainable standard of health cannot be achieved.

Dying before one’s time has been a prominent theme in classic literature and poetry. Catherine Linton’s youthful death in Wuthering Heights leaves behind a bereft Heathcliff and generations of mourning readers. The author herself, Emily Brontë, died young from tuberculosis. John Keats’ Ode on Melancholy captures the transitory beauty of 19th century human lives too often ravished by early death. Keats also died of tuberculosis, aged 25. “The bloom, whose petals nipped before they blew, died on the promise of the (...) fruit” is how Percy Bysshe Shelley expressed his grief over Keats’ death. Emily Dickinson wrote So Has a Daisy Vanished, being driven into depression by the early loss of loved ones from typhoid and tuberculosis. (shrink)

In this issue of Narrative Inquiries in Bioethics, fat individuals share their healthcare experiences. Through reading the narratives, it becomes clear that access to proper healthcare is often blocked for fat patients by a variety of things, including shame and fat stigma. From physical spaces in which they do not fit, to doctors who diagnose all of their problems as ‘fat’, similar themes are echoed across the stories. And common are the refrains for better treatment, less shame, (...) and access to evidenced based care from educated providers. In this manuscript, I highlight common themes from the stories and integrate them with themes from the literature. I allow the two dissenting narratives to suggest other ways of thinking about fatness and well–being. And I conclude by suggesting ways to provide better access to quality healthcare for fat individuals. (shrink)

Many countries have imposed strict regulations on the genetic information to which insurers have access. Commentators have warned against the emerging body of legislation for different reasons. This paper demonstrates that, when confronted with the argument that genetic information should be available to insurers for health insurance underwriting purposes, one should avoid appeals to rights of genetic privacy and genetic ignorance. The principle of equality of opportunity may nevertheless warrant restrictions. A choice-based account of this principle implies that it (...) is unfair to hold people responsible for the consequences of the genetic lottery, since we have no choice in selecting our genotype or the expression of it. However appealing, this view does not take us all the way to an adequate justification of inaccessibility of genetic information. A contractarian account, suggesting that health is a condition of opportunity and that healthcare is an essential good, seems more promising. I conclude that if or when predictive medical tests (such as genetic tests) are developed with significant actuarial value, individuals have less reason to accept as fair institutions that limit access to healthcare on the grounds of risk status. Given the assumption that a division of risk pools in accordance with a rough estimate of people's level of (genetic) risk will occur, fairness and justice favour universal health insurance based on solidarity. (shrink)

During a prostate exam, Mr. Watson, age 65, learns that his prostate appears to be abnormal. The family physician conducting the exam, Dr. Kleinman, informs Mr. Watson that he may have prostate cancer. Mr. Watson agrees to a variety of tests, including blood tests, bone scans, ultrasound scanning, and a biopsy. After learning about this possible diagnosis and these tests, Mr. Watson surfs the Web for information about prostate cancer and gathers data from many different sources, including the National Cancer (...) Society, the National Institutes of Health, Johns Hopkins University, the Mayo Clinic, and medicine sites. He also searches for information from medical journals using MEDLINE, visits several chat rooms on prostate cancer, and joins some e-mail lists. He arrives in Dr. Kleinman's office for a follow-up appointment with a stack of material and many questions. Dr. Kleinman is surprised, irritated, and offended. He recommends that Mr. Watson have a prostatectomy followed by radiation, but Mr. Watson does not want this operation. He would rather receive a form of radiation therapy recently approved by the FDA that he learned about through his own research. Dr. Kleinman admits that he does not know much about this new treatment, but he says that he would read up on it and consult an oncologist. (shrink)

Clinical ethics services are increasingly receiving case referrals regarding requests for access to experimental therapies. Sometimes, patients or families seek access to an experimental therapy that has not been subsidised by any government scheme, and for which no local clinical trial is underway. All else being equal, a patient may benefit from receiving an experimental therapy without making any other patient worse off. However, within public healthcare systems, treating only one patient with an experimental therapy, when others (...) might also benefit from it, evokes a troubling sense of inequity. In this paper, I examine the relevance of Pareto principles and the ‘levelling down’ objection to ethical deliberation about patient or family-initiated requests for experimental therapies. While facilitating access to an experimental therapy may benefit a patient without making any other patients worse off, this does not dispel ethically relevant considerations concerning equity. When deliberating about cases i... (shrink)

There is currently no international consensus around post-trial obligations toward research participants, community members, and host countries. This literature review investigates arguments and attitudes toward post-trial access. The literature review found that academic discussions focused on the rights of research participants, but offered few practical recommendations for addressing or improving current practices. Similarly, there are few regulations or legislation pertaining to post-trial access. If regulatory changes are necessary, we need to understand the current arguments, legislation, and attitudes towards (...) post-trial access and participants and community members. Given that clinical trials conducted in low-income countries will likely continue, there is an urgent need for consideration of post-trial benefits for participants, communities, and citizens of host countries. While this issue may not be as pressing in countries where participants have access to healthcare and medicines through public schemes, it is particularly important in regions where this may not be available. (shrink)

Bill 20, An Act to Enact the Act to promote access to family medicine and specialized medicine services and to amend various legislative provisions relating to assisted procreation, was introduced to reduce costs associated with Québec’s healthcare in general and in vitro fertilisation in particular. Passed in November 2015, the new law introduces a number of exclusion criteria for access to and funding for IVF treatment. Remarkably, one exclusion criterion—prior voluntary sterilisation—has prompted little critical commentary. The two (...) justifications offered for restricting funding for IVF on the basis of voluntary sterilisation are that there are cheaper options than IVF for sterilised individuals who want children, and society should not have to pay for IVF for persons who are infertile by choice. I argue that both of these justifications are unsatisfactory, insofar as they contravene the chief value underlying, and current practices of, Canadian healthcare, and rely on problematic ascriptions of personal responsibility for health. (shrink)

Ethical perspectives on regional, rural, and remote healthcare often, understandably and importantly, focus on inequities in access to services. In this commentary, we take the opportunity to examine the implications of normalizing metrocentric views, values, knowledge, and orientations, evidenced by the recent (2022) New South Wales inquiry into health outcomes and access to hospital and health services in regional, rural and remote New South Wales, for contemporary rural governance and justice debates. To do this, we draw on (...) the feminist inspired approach to rural health ethics involving analysis of power relationships developed by Simpson and McDonald and related ideas from critical health sociology. In presenting this analysis, we extend contemporary thought about spatial health inequities and structural violence. (shrink)

Background The prioritization protocols for accessing adult critical care in the extreme pandemic context contain tiebreaker criteria to facilitate decision-making in the allocation of resources between patients with a similar survival prognosis. Besides being controversial, little is known about the public acceptability of these tiebreakers. In order to better understand the public opinion, Quebec and Ontario’s protocols were presented to the public in a democratic deliberation during the summer of 2022. Objectives (1) To explore the perspectives of Quebec and Ontario (...) citizens regarding tiebreakers, identifying the most acceptable ones and their underlying values. (2) To analyze these results considering other public consultations held during the pandemic on these criteria. Methods This was an exploratory qualitative study. The design involved an online democratic deliberation that took place over two days, simultaneously in Quebec and Ontario. Public participants were selected from a community sample which excluded healthcare workers. Participants were first presented the essential components of prioritization protocols and their related issues (training session day 1). They subsequently deliberated on the acceptability of these criteria (deliberation session day 2). The deliberation was then subject to thematic analysis. Results A total of 47 participants from the provinces of Quebec (n = 20) and Ontario (n = 27) took part in the online deliberation. A diverse audience participated excluding members of the healthcare workforce. Four themes were identified: (1) Priority to young patients - the life cycle - a preferred tiebreaker; (2) Randomization - a tiebreaker of last resort; (3) Multiplier effect of most exposed healthcare workers - a median acceptability tiebreaker, and (4) Social value – a less acceptable tiebreaker. Conclusion Life cycle was the preferred tiebreaker as this criterion respects intergenerational equity, which was considered relevant when allocating scarce resources to adult patients in a context of extreme pandemic. Priority to young patients is in line with other consultations conducted around the world. Additional studies are needed to further investigate the public acceptability of tiebreaker criteria. (shrink)

Inequities in access to oncology care among Indigenous peoples in Canada are well documented. Access to oncology care is mediated by a range of factors; however, emerging evidence suggests that healthcare providers, including nurses, play a significant role in shaping healthcare access. The purpose of this study was to critically examine access to oncology care among Indigenous peoples in Canada from the perspective of oncology nurses. Guided by postcolonial theoretical perspectives, interpretive descriptive and critical (...) discourse analysis methodologies informed study design and data analysis. Oncology nurses were recruited from across Canada to complete an online survey (n = 78). Nurses identified a range of barriers experienced by Indigenous peoples when accessing oncology care, yet located these barriers primarily at the individual and systems levels. Nurses perceived themselves as mediators of access to oncology care; however, their efforts to facilitate access to care were constrained by the dominance of biomedicine within healthcare. Nurses' constructions of access to oncology care highlight the embedded narrative of individualism within nursing practice and the relative invisibility of racism as a determinant of equitable access to care among Indigenous peoples. This suggests a need for oncology nurses to better understand and incorporate structural determinants of health perspectives. (shrink)

Introduction: There is currently no binding, internationally accepted and successful approach to ensure global equitable access to healthcare during a pandemic. The aim of this ethical analysis is to bring into the discussion a legally regulated vaccine allocation as a possible strategy for equitable global access to vaccines. We focus our analysis on COVAX (COVID-19 Vaccines Global Access) and an existing EU regulation that, after adjustment, could promote global vaccine allocation. -/- Methods: The main documents discussing (...) the two strategies are examined with a qualitative content analysis. The ethical values reasonableness, openness and transparency, inclusiveness, responsiveness and accountability serve as categories for our ethical analysis. -/- Results: We observed that the decision-making processes in a legal solution to expand access to vaccines would be more transparent than in COVAX initiative, would be more inclusive, especially of nation states, and the values responsiveness and accountability could be easily incorporated in the development of a new regulation. -/- Discussion: A legal strategy that offers incentives to the pharmaceutical industry in return for global distribution of vaccines according to the Fair Priority Model is an innovative way to achieve global and equitable access to vaccines. However, in the long term, achieving the Sustainable Development Goals will require from all nations to work in solidarity to find durable solutions for global vaccine research and development. Interim solutions, such as our proposed legal strategy for equitable access to vaccines, and efforts to find long-term solutions must be advanced in parallel. (shrink)

Notwithstanding the expectations related to the ‘invasion’ of human rights into the field of healthcare, the complexity of this field raises some problematic questions about the applicability of such a legal instrument. The present paper analyses the possible limits to the content of the core right to healthcare. These limits are discussed through the examination of two normative pillars of health law: the right to individual self-determination (or the principle of individual autonomy) and the right to healthcare (...) itself. The authors conclude that in the context of the scarcity of resources the effectiveness of the guarantees of the right to healthcare will depend on the narrowing of the concept of the right by choosing the biomedical definition of health as the basis. (shrink)

Gender dysphoria is a clinically significant incongruence between expressed gender and assigned gender, with rapidly growing prevalence among children. The UK High Court recently conducted a judicial review regarding the service provision at a youth-focussed gender identity clinic in Tavistock. The high court adjudged it ‘highly unlikely’ that under-13s, and ‘doubtful’ that 14–15 years old, can be competent to consent to puberty blocker therapy for GD. They based their reasoning on the limited evidence regarding efficacy, the likelihood of progressing to (...) cross-sex hormone therapy and the ‘life-changing consequences’ of puberty blockers. In this article, I offer two concurrent arguments to dispute their reasoning. First, I argue that minors can be competent to consent to puberty blockers for GD, because the decision to undergo puberty blocker therapy is no more complex or far-reaching than other medical decisions that we accept a child should be able to make. Second, I argue that—irrespective of competence—such legal restriction for all children fundamentally contradicts the central ethical tenet of child healthcare: best interests. For these two reasons, the high court should not restrict access to puberty blockers for competent GD children. (shrink)

In recent years, policy debates in the United States have focused heavily on rising healthcare costs and what measures can be taken to ensure greater provision of healthcare to individuals of limited means. Much of the rhetoric on this subject has taken on an explicitly moral character, and one common sentiment is that healthcare is or should be viewed as a basic human right. However, the notion of a right to healthcare has not been well articulated, (...) and critics have failed to distinguish between legal and moral rights. Additionally, there are numerous problems inherent to viewing healthcare as a basic human right-many of which are in direct conflict with distinctly American conceptualizations of rights. The present paper reviews the debate over “rights”-both legal and natural-to healthcare, and argues that problems associated with natural rights arguments render them severely compromised. Instead, market systems commonly accepted in American society may be better suited to reducing healthcare costs and increasing access to services in the United States. (shrink)

Do pharmaceutical companies have a moral obligation to expand access to investigational drugs to patients outside the clinical trial? One reason for thinking they do not is that expanded access programs might negatively affect the clinical trial process. This potential impact creates dilemmas for practitioners who nevertheless acknowledge some moral reason for expanding access. Bioethicists have explained these reasons in terms of beneficence, compassion, or a principle of rescue, but their arguments have been limited to questions of (...) moral permissibility, leaving for future research the question of whether expanded access is morally obligatory. We take up this further question and argue that pharmaceutical companies have a moral obligation to expand access. Our defense is not based on beneficence, compassion, or rescue, but instead on a reciprocal moral expectation resulting from existing social commitments that help ensure a robust pharmaceutical practice within the broader healthcare system. Our aim is to give this obligation, along with several others, a coherent and plausible structure within the wider clinical trial process so that one might better explain the sources of the dilemmas and their possible resolutions. (shrink)