Sustainable Development Goals (SDGs) by the year 2030. As the SDGs are interdependent, intersectional and interdisciplinary, so must be their solutions. This chapter argues that the best way to identify, develop, and scale solutions of such quality is  entrepreneurship, building on the principles of open innovation, cutting-edge technologies, and social business. The COVID-19 pandemic in early 2020 in particular serves as a stark reminder of the interconnected nature of the SDGs and the challenges we face in achieving them. In this article, we explore the third SDG (SDG-3), “Good health and well-being”. We show the potential for digital entrepreneurship to foster the rise of new forms of digital health care and to accelerate the digitalization of the healthcare sector. Due to both perceived and real issues of regulatory compliance, user experience, and long investment/equipment use cycles, SDG-3 has been one of the slowest to adopt innovative solutions by far. We discuss specific areas, such as blended reality or quantum computing, for emerging and future digital health applications. In this chapter, we provide: the “memoreBox” of social start-up RetroBrain R&D, a special edition of gamelab.berlin’s app “Singleton”, and D-Wave’s free access to its cloud quantum computing services. All these examples of digital entrepreneurship utilize in whole or in part a combination of open innovation, future and emerging technologies, and social business, thus supporting our rationale. The article closes with recommendations for different stakeholders of entrepreneurial ecosystems, demonstrating both the necessity and the potential of digital entrepreneurship for the SDGs and the “Decade of Action”.In 2020, the UN launched the “Decade of Action” to achieve the  We have a choice—either we go back on the old tracks, or we build new tracks to take us to a new civilization. We are now in position to build new tracks. We missed our chance in 2008 in building those after the global financial crash. Let us not miss the chance this time.Muhammad Yunusagenda for sustainable development that “provides a shared blueprint for peace and prosperity for people and the planet, now and into the future”  initiated and adopted by all United Nations Member States in 2015 have been a driving force behind numerous initiatives and projects around the world. They constitute an digital health and especially digital therapeutics are expected to have a tremendous and positive impact on society if they are adopted by more and more patients, doctors, and other healthcare professionals  per capita income over the past 200–300 years  concludes that “synergetic partnerships, such as R&D collaborations with universities and incumbent firms, create opportunities at all three levels” and that innovation benefits the most from those partnerships. Recent findings suggest that increased links to and knowledge flows from various external partners, particularly in uncertain environments, lead to improved innovation outcomes : after the digital transformation”. The manifold areas in which this impact can be seen include “measuring devices with much higher precision, vastly enhanced data communication security, and […] higher-performance satellites and computers”  activity. The popular VR rhythm-game y Fingas . In a sty Fingas . Anothery Oculus . Many ofy Oculus  anticipay Oculus  Fig. 1)Beat SabeShared Value  adds multiple layers to the well-known version by Osterwalder to let digital entrepreneurs better engage with the SDGs.We see digital entrepreneurship as a necessary component in achieving many, if not all, of the SDGs. A variety of conceptual models, policy frameworks and measurement instruments have been developed to study the driving and impending factors influencing digital entrepreneurship as well as the factors influencing organizational decision-making which furthers sustainable and more generally SDG-oriented business practices. Many of these frameworks, however, adopt a macro-perspective with a focus on the incentives and obstacles faced by multinational enterprises, or organizations that are designed to quickly scale to a global level  business. These new aspects will directly help future digital entrepreneurs to evaluate how their solutions benefit the SDGs. First, in this canvas, not only the “usual” value propositions are to be explored, but, referring to the definition of social business, also the proposed value to the SDGs. This means that the potential project and its value proposition needs to relate to the SDGs and to explain how it supports achieving them. Second, we refer to the concept of open innovation and the importance of multiple and different types of relationships with a variety of network partners in order to drive the development and commercialization of innovations. We delimited key environmental actors and influencers from key partners. By answering the question “Who is mostly impacting your field of impact/SDGs in the next ten years?” potential entrepreneurs learn that it is often the network to regulatory authorities or other societal or economic multipliers that can bring a competitive advantage. Working on your network and keeping key actors that affect your field of impact can pay off early on. Third, Beneficiaries are of utmost importance to consider: in contrast to customer segments, thinking about beneficiaries enables digital entrepreneurs to embrace the “triple bottom line”, where environmental, social, and governmental actors benefit. This sensitization is supported by referencing concepts like Ashoka’s Theory of Change, or the social business approach Drayton . Fourth,To summarize, we developed the “Decade of Action”-Canvas with these four specific adjustments, whereas the other fields of Osterwalder’s BMC remain mostly unchanged Fig. .Fig. 3“Dhttp://www.doacanvas.org/.The most current version can always be found at digital-therapeutics company RetroBrain R&D, a spin-off of Humboldt-Universität’s Cluster of Excellence. RetroBrain R&D develops a fully gesture-controlled video game console named “memoreBox”, which has been called “a benchmark in the therapeutic gamification industry” . Under the patronage of the head of the Federal Chancellery and supported by the Federal Government’s “Digital Council”, more than 40,000 participants developed digital solutions to problems related to the COVID-19 pandemic. These participants spent 48 h working on altogether 1500 ideas, of which many can be classified as digital entrepreneurship and/or social businesses. Overall, “the model for this attempt to find digital solutions in the global fight against the coronavirus pandemic was a similar event in Estonia”  crisis with new solutions”, the Federal Government of Germany had invited people to take part in a virtual “#WeVsVirus” hackathon  via new algorithms for crucial soil composition analysis, nitrogen fixation, etc.Good health and well-being (SDG-3) via increased velocity of drug discovery and simulation.Clean water and sanitization (SDG-6) via optimized water distribution, new catalyst discovery/developmentAffordable/Clean energy (SDG-7) via advances in materials science leading to, e.g. better batteriesClimate action (SDG-13) through improved meteorological modelling and analysis.As we have indicated above, quantum computing will certainly have wide-ranging implications and a substantive impact on all aspects of life in the future. This obviously includes the SDGs. Witold W. Kowalczyk of Harvard-spinoff Zapata Computing , a quantOne company that has stepped up in the wake of the COVID-19 outbreak is the Canadian quantum computing company D-Wave, one of the earliest  in the potentially impactful organizations working on the SDGsHarness the potential of diversity, notably female entrepreneurship (Halberstadt et al. Include founders and entrepreneurial ecosystems as part of the regulatory and economic policy framework to cope with COVID-19To obtain economic and social value from emerging technologies it is not enough generating technology. Moreover, it is necessary that the technology will be disseminated, absorbed and put to action before its full value can be derived (Chesbrough The current COVID-19 pandemic shows how important the fight for the Sustainable Development Goals really is and how COVID-19 has prompted a wide variety of open, collaborative responses (Chesbrough open innovation for complex problems, future and emerging technologies for future proof solutions and social business thinking to keep societal issues in mind. The relevance of digital health and therapeutics for achieving the SDGs is rising and an event severely restricting access to healthcare professionals and doctors due to capacity overload or isolation, such as the COVID-19 pandemic, serves as a stark reminder of just how fragile many of our achievements towards particularly SDG-3 can be in the face of global calamity. Fostering an entrepreneurial spirit among young people, but especially those who are not traditional founders such as women, the elderly, people with disabilities, refugees, and others while also encouraging open innovation and cooperation within sectors will help build a more inclusive and resilient economy and health sector.Furthermore, our findings culminated in an easy-to-use canvas. We took Osterwalder’s “Business Model Canvas” and redesigned it to help digital entrepreneurs effectively tackle the SDGs: But how can one use the “Digital Entrepreneurship for the ‘Decade of Action’—Canvas” best? Innovative teaching and learning formats at universities and other forms of higher learning—notably those engaged in lifelong learning—have increased, ever since the first formal entrepreneurship education formats were created in the early 2000s. However, many entrepreneurship education curricula continue to disregard the idea of fully Digital Entrepreneurship, not to mention how little is on offer addressing health challenges in particular. As “really big opportunities arise only when brilliant innovation meets overwhelming market needs at just the right time” (von Windheim


In a society where ageing of the population and the increasing prevalence of long-term conditions are major issues, collaboration between primary and secondary care is essential to provide continuous, patient-centred care. Doctors play an essential role at the primary-secondary care interface in realising ‘seamless’ care. Therefore, they should possess collaborative competencies. However, knowledge about these collaborative competencies is scarce. In this review we explore what competencies doctors need to promote collaboration between doctors at the primary-secondary care interface.We conducted an integrative literature review. After a systematic search 44 articles were included in the review. They were analysed using a thematic analysis approach.We identified six themes regarding collaborative competencies: ‘patient-centred care: a common concern’, ‘roles and responsibilities’, ‘mutual knowledge and understanding’, ‘collaborative attitude and respect’, ‘communication’ and ‘leadership’. In every theme we specified components of knowledge, skills and attitudes as found in the reviewed literature. The results show that doctors play an important role, not only in the way they collaborate in individual patient care, but also in how they help shaping organisational preconditions for collaboration.This review provides an integrative view on competencies necessary for collaborative practice at the primary-secondary care interface. They are part of several domains, showing the complexity of collaboration. The information gathered in this review can support doctors to enhance and learn collaboration in daily practice and can be used in educational programmes in all stages of medical education. In a society where ageing of the population and the increasing prevalence of long-term conditions are major issues, collaboration between primary and secondary care is essential. A substantial part of the patient population has more than one chronic condition, leading to many transitions between primary and secondary care. These transitions are associated with a high risk of medical errors , 2. To aPrimary care plays an important role in the care and the coordination of care for patients with multimorbidity . To succTo provide good collaboration, both primary and secondary care doctors should be equipped with collaborative competencies. Doctors’ training programmes acknowledge the importance of learning collaboration; it is seen as a core competency in postgraduate and continuing medical education, with increasing attention for the primary-secondary care interface , 7. NeveTo fill this knowledge gap, we performed a literature review aiming to answer the question: “Which competencies do doctors need to promote collaboration between primary and secondary care doctors, in order to provide good patient care at the primary-secondary care interface?” This knowledge is essential when developing education in the collaborative competency domain, in graduate as well as in postgraduate training. Moreover, with this knowledge doctors can recognise opportunities to improve theirs and other’s collaborative competencies to optimise continuous, patient centred care.Since an integrative review approach is the the broadest type of review methods allowing for the simultaneous inclusion of experimental and non-experimental research in order to more fully understand a phenomenon of concern , we consThe research team consisted of two general practitioners (GPs) (NS and WA), one medical specialist (JG), one medical specialty resident and PhD student in the field of intraprofessional collaboration (MJ), one educationalist and medical doctor (CF) and one educationalist (MS). The GPs and the medical specialist were involved in (post)graduate training programmes.We performed a literature search with the following search terms and their related terms: 1)“interprofessional or interdisciplinary collaboration”, (2)“primary care doctors”, (3)“secondary care doctors” and (4)“competencies ”. We used both MESH-terms and free-text terms, a full list of the search terms is available online  and a second researcher (NS or MS) to determine their inclusion. An article was included when it discussed collaboration between doctors from both primary and secondary care, and described competencies associated with this collaboration  and JG, MS, NS or CF), using four answer options: yes, no, partly or not applicable. We did not exclude articles based on quality, because of the low number of relevant articles and the aim of our research: to give the readers insight into knowledge on collaborative competencies found in literature. We did find, however, that we needed to provide the reader with information on the quality of the reviewed articles. Therefore we assigned a critical appraisal score (CAS) to each article that could be fully scored. An article that could be fully scored and scored yes on all questions was given a score of 12 out of 12 (2 points for each question). Articles with a score beneath 7 out of 12 were rated as low quality, articles with a score ≥ 7 were rated as sufficient quality.We analysed the articles using thematic analysis to create a convergent qualitative synthesis , 19. We We included and coded 44 articles and secondary care doctors (SCDs) are displayed in Table “GPs feel undermined when some mental health providers refer their patients with physical health problems to other medical specialists without consulting the GP.” t et al. )“Family physicians, conversely, were annoyed when specialists "took over" their patients–particularly when they referred them to other specialists” u et al. )Analysing these fragments, we judged that specialists could influence these situations through a change in behaviour and consequently coded these fragments as: “SCD discusses re-referral with the PCD”.Hardly any articles primarily addressed the collaborative competencies. Therefore, we had to derive competencies from experiences, motives, barriers and facilitators, or from conditions mentioned as necessary for collaboration between PCDs and SCDs. As explained in our methods section the following question was leading: “can we reasonably expect a doctor to influence the described condition, facilitator or barrier for collaboration?” Examples are the following fragments:Overall, we identified six main themes within the collaborative competency domain: ‘patient-centred care: a common concern’, ‘collaborative attitude and respect’, ‘roles and responsibilities’, ‘mutual knowledge and understanding’, ‘communication’ and ‘leadership’. An overview of the themes and subthemes  is given in Table “The specialists felt that patients should be cared for by a qualified team, possibly with the GP in a central role. For this to work effectively, however, everybody involved has to have a good understanding of the common goals.” Several articles , 55, 60“Better cooperation is likely to be accompanied by a change in attitude from “mine” and “your” patients or tasks to “ours”” Many articles , 60, 64 e et al. )“I [Primary care physician] would like [to get] the sense more of teamwork….I would like to be thought of and operate as a respected colleague who actually probably knows the patient much, much better and will see the patient quite frequently……” Participants in collaboration should respect each other and see each other as equals. They should be open minded and willing to look beyond one’s own position. The following fragment further illustrates this theme: r et al. )In the review of Dossett et al. PCDs expressed their desire to be involved when patients are undergoing active treatment in the hospital, but in practice often felt excluded .Another recurrent theme was ‘roles and responsibilities’ , 63, 64,“Participants reported a clear disagreement over which provider  was responsible for specific tasks during various parts of the referral process, including information gathering, patient workup, and follow-up.” One study showed that ambiguous roles and responsibilities hindered good referrals: g et al. )“Education should be a two-way process since this will help promote mutual understanding of different roles and functions within the medical profession.” .Two articles focused on the learning-teaching interaction that can occur in consultations , 57. AccMarshall ).Several articles , 61, 63“All the interviewees considered it important for the specialists to increase and improve their understanding of the GPs' working method and the competencies associated with the profession of family medicine.” n et al. )In their study Wadhwa et al. described the tensions in interdoctor telephone consultations. One source of tension is the differing context, asking for understanding of the profession and the perspective of the other. “The differing contexts in which the callers and consultants work were repeatedly described as a source of tension. When placing a telephone consultation, the caller is working from a context in which he or she is dealing with a difficult case outwith his or her level of expertise, creating an increased level of urgency from caller’s point of view. In contrast, however, for the consultants, answering telephone consults is 1 of many daily activities and is often not viewed as a high priority.” Both partners in the collaborative process asked for understanding, as seen in the following fragments: Marshall )“All thea et al. )Almost all articles, including 6 with no CAS and 6 with a low CAS, emphasised the importance of good communication , 58–64.“good communication and information sharing about patient care was core work” .In a qualitative study of GP-led integrated diabetes care in primary health care it was stated that r et al. ).Studies described how, when and what should be communicated. A few articles focused solely on written communication with recommendations for referral and for reply letters , 62, 64.“The consultant must improve administrative and secretarial efficiency in order to prevent subsequent problems in communication or delay in appropriate care.” The importance of leadership in collaborative practice was discussed in a number of articles , 60, 61 t et al. ) and 3. e et al. )This review provides an integrative view on what competencies doctors need to provide good collaboration at the primary-secondary care interface. These competencies can be grouped into six themes that reflect different aspects of this collaboration: ‘patient-centred care: a common concern’, ‘collaborative attitude and respect’, ‘roles and responsibilities’, ‘mutual knowledge and understanding’, ‘communication’ and ‘leadership’. This variety shows the complexity of primary-secondary care collaboration.Patient-centred care, the first theme, is nowadays a key element of high-quality care in many countries. From that scope collaboration is vital . It is kGood collaborative practice asks for a collaborative, respectful attitude from PCDs and SCDs, our second theme. In hierarchal practices like medicine, collaboration can be influenced by power relations . It is dUnclear roles and responsibilities were often named as barriers for good collaboration. This is also found in other research about collaboration. In a review by Supper et al., determining facilitators and barriers for interprofessional  collaboration in primary care, the role of each professional was important: a lack of definition, awareness and recognition of these roles appeared to be a barrier for collaboration .The theme of roles and responsibilities has a close relation with our fourth theme, mutual knowledge and understanding. Although it is impossible to know all collaborative partners personally, it is possible and needed to have an idea about the context they are working in. Strategies that can help improve this knowledge are traineeships in the work contexts of collaboration partners, observation of each other’s work in practice, directly asking the other about his or her context or actively sharing information about your context with your collaboration partner. This last strategy is part of general practice programmes that emphasise the importance of promoting the expertise and role of general practice to SCDs , 72.The fifth theme, communication, is an essential aspect of collaboration. This theme is intertwined with the other themes. Good communication should take place in a respectful way and is largely based on knowledge about what the other needs to continue caring for the patient.Our last theme, leadership, focuses on the power of doctors to change the practice they are working in, to facilitate collaboration. Similarities can be seen with the leader role of the CanMEDS model where one of the key competencies is described as: “contribute to the improvement of the health care delivery teams, organisations and systems” .This review includes publications from 1990 till 2019, a period in which health care and the primary-secondary care interface have changed. However, the themes and subthemes concerning collaborative competencies are found diffusely over the publications suggesting that they are not very sensitive to time or a changing context.To provide high-standard patient-centred care good collaboration is vital. Collaboration is complex and challenges lie both at personal and at organisational levels. These levels are related with each other . The ideThe knowledge gathered in this review gives insight into what doctors need to know and show to realise good collaboration at the primary-secondary care interface. To improve collaborative behaviour, the first step is to know what desired behaviour contains. The results from this review can be used as a framework to get insight into deficiencies in collaborative behaviour and for (self)evaluation purposes. Furthermore, the knowledge can be used for formulating learning goals in graduate, post-graduate and continuing medical education.Improving and learning collaboration in practice is a challenge, as workload is high and several tasks compete for the doctor’s attention. However, it is especially in this daily practice that most of the doctors’ competencies are acquired through workplace learning , 75. ForTo our knowledge this is the first review on collaborative competencies for doctors require to work optimally at the primary-secondary care interface. We used collaboration as a broad term and did not limit in patient groups or specialty. We used a rigorous method allowing inclusion of various types of literature.Although we used various and broad search terms, during our analysis we found several other terms referring to the collaboration between PCD and SCD for example, relationship, consultation and referral. Therefore, we may have missed articles. However, we do not expect the themes to change with the inclusion of more articles, since no new themes emerged after the analyses of the first 13 articles of our set of 44 articles, indicating saturation of the information.Another limitation is that we chose to include all papers to capture the full depth and breadth of the topic. We realise that the opinion papers were not peer reviewed and that quality is difficult to determine. Furthermore, six research articles were of low quality according to the critical appraisal score. This could affect the rigour of our findings. Therefore, we provided information on quality scores in the results section, showing the quality of the underlying papers which contributed to the themes. Especially the themes of ‘Leadership’ and ‘Patient-centered care: a common concern’ are based on few articles of which about half are opinion and low quality research articles. Based on discussions within the team we judged that the opinion papers .Additional file 3. Critical appraisal included articles.Additional file 4. Enhancing transparency in reporting the synthesis of qualitative research: the ENTREQ statement.


An estimated 650 million girls and women alive today married before their 18th birthday. Referred to as girl child marriage, the formal or informal union of the girl-child before age 18, the practice is increasingly recognized as a key roadblock to global health, development, and gender equality. Although more research than ever has focused on girl child marriage, an important gap remains in deconstructing the construct. Through an extensive review of primary and secondary sources, including legal documents, peer-reviewed articles, books, and grey literature across disciplines, we explore what the term “girl child marriage” means and why it more accurately captures current global efforts than other terms like early, teenage, or adolescent marriage. To do this, we dive into different framings on marriage, children, and gender. We find that there has been historical change in the understanding of girl child marriage in published literature since the late 1800s, and that it is a political, sociocultural, and value-laden term that serves a purpose in different contexts at different moments in time. The lack of harmonized terminology, particularly in the global public health, prevents alignment amongst different stakeholders in understanding what the problem is in order to determine how to measure it and create solutions on how to address it. Our intent is to encourage more intentional use of language in global public health research. Worldwide, an estimated 650 million girls and women alive today married before their 18th birthdays . ReferreNew York Times, and Teen Vogue have increasingly discussed this social phenomenon, describing its occurrence and consequences for women all over the world  is required to stand as the donor of the bride, as is the case in every Hindoo marriage. “Marriage,” says an eminent doctor (Hindoo) of law, “is viewed as a gift of the bride by her father or other guardian to the bridegroom.” The marital union is thus a divine union; it is an act of God and not of man. It is apparent that marriage is not a civil contract, and the consent is not the essence of it. The Roman Catholics regard it as a sacrament; so do the Hindoos [[Marriage] is expressly said to be a divine union. Christ said “What God  Hindoos .Indeed, Roy’s writings even today serve as a reminder that colonial legacies and an increasing mixture of cultures are redefining how many now conceptualize a marriage. A study in Uganda, for example, illuminates that although concepts like “love” and “faithfulness” are often used synonymously with marriage in discourse, the reality of marriage, in practice, may be expressed in different ways [Marriage, particularly in traditional societies, is rooted in sociocultural and economic contexts involving the joining of two families, rather than just two individuals , 38. Thient ways . Marriagent ways .Importantly, some relationships considered marriage in local contexts may not result in a legal union , creatinDefinitions of marriage are constructed in different ways, including legally and socioculturally as briefly touched on above. Legal frameworks are perhaps a top-down approach to constructing definitions of marriage and have resulted in broad international policy agreement on the creation of harmonious regional agreements and national legislation. Subsequently, legal definitions contribute to understanding marriage civilly and across geographic boundaries, which has the advantage of being more tangible to conceptualize, practice, and enforce. Yet in societies as complex and multifaceted as those that exist today, where civil law only serves as one influence on how marriage is constructed and understood, marriage cannot be reduced to its legal definition alone. Although understanding marriage from only a legal perspective loses the customary, religious, and broader sociocultural contexts for which individuals in communities may understand and engage in the practice of marriage, it is among the most common ways to define marriage across contexts.The construct of “girl child marriage” also incorporates the concept of a “child,” another ambiguous and difficult term to define. Here, too, international legal frameworks have played an important role in creating shared global norms defining childhood. As early as 1924, the League of Nations, a precursor to the United Nations (UN) established after World War I to maintain world peace, identified children as an important and special population. A first framework was put forth stating that children “have inalienable rights and are not the property of their father”; Sharma and Gupta  further The 1990 Convention on the Rights of Child (CRC), a legally-binding international agreement ratified by all but one country, was a major turning point. Article 1 defines that “a child means every human being below the age of eighteen years unless under the law applicable to the child, majority is attained earlier” . The CRCAn ethical, or moral, argument supports the establishment of a “child-adult” distinction. As Schapiro  argues, Developmentally, a child is understood to achieve biological, cognitive, psychological, and social milestones over time . At diffFirst, acknowledging wide cultural variation, adolescents are increasingly delaying marriage—for some, to pursue education or employment options. Urbanisation has an important role in this societal shift. Second, historically, societies expected childbearing to follow shortly after marriage; now norms are shifting towards delayed childbearing. These key changes, which affect all societies by varying degrees, have expanded the gap between puberty and marriage, and between marriage and childbearing .Moreover, interntional agenda-setting organizations such as the WHO and World Bank have further called out youth (10–24 years) and suggested that for health and human development interventions, there is a need to consider young people through the first 8000 days (through age 21) [In recent years, a further distinction of adolescence, referring to older children who are still not yet adults, has emerged. Defined by the World Health Organization (WHO) as individuals aged 10 to 19, adolescents biologically and socioculturally occupy a gray space between childhood and adulthood . Only re age 21) ; such guImportantly, what perhaps all of this points to, defining a “child” has evolved historically and in different spaces and places. These varying ideas of childhood and adolescence are relational concepts and their definitions at a given moment are influenced by culture, history, local ideology, and different levels of law . MacleodThe fluidity of the concept of childhood, as detailed above, presents a challenge in the universality of the definition of a child. Different stages of human development are often ascribed to age ranges where these stages are commonly observed and achieved, yet it is not difficult to imagine that transition from childhood to adolescence to adulthood varies depending on local context. For example, where completion of secondary school in some communities signifies a transition, age 18 in one setting may be the normal age of this transition while age 24 may be the age in another setting; completing secondary schooling may be a rare event in other settings, which would make that marker of transition near impossible. In recognition of such differences, normative definitions of a child such as in the CRC acknowledge that countries may have their own guidelines that lower (or raise) the legal age of majority ; it is aIn reflecting on the construct of “girl child marriage,” a child cannot be simply viewed as less than adult: small, weak, young, helpless, little, irresponsible. In fact, such stereotypical ideas of a child are, in many cases and contexts, incorrect. Yet a reference to “girl child marriage” or “child marriage” rather than “adolescent marriage,” “teenage marriage,” or even “early marriage” reminds the reader that a protected population, demonstrated to be less developmentally or socially mature than an adult, is the population being addressed. We have proposed the use of this term to explicitly connect this scientific research with the human rights and advocacy discussions, reminding the reader that the focus is on social experiences young women have experienced preceding their adult life.A child, as referenced in “girl child marriage,” should be understood to consist of individuals within the first couple of decades of life, afforded varying levels of legal responsibility and accountability, biological and sociocultural maturity, and agency in a cultural context at a given moment in time. Definitions of a child often overlap with an adolescent, pointing toward a unique period earlier in an individual’s life that is distinct across legal, biological, and developmental domains. Like the construct of marriage, international legal frameworks setting a child at age 18 – which draw from theories of child development, ethics, and other areas – have been successful in building agreement around a shared definition of a child that can be operationalized more widely, particularly in the context of consent for marriage.We have elected to suggest the need to make a distinction between “child marriage” and “girl child marriage,” a departure from most publications by explicitly engaging with the construct of a “girl.” Child marriage, by definition, impacts both boys and girls , yet exiIndeed, while not discounting that boys also experience child marriage, the potential severity of its consequences makes a focus on girls important. Married girls and young women were traditionally considered more protected than unmarried counterparts, due to the perceived economic security and reduced risk of sexually-transmitted infections as a result of a perceived reduction in sexual partners . HoweverThe use of the term “girl child marriage,” moreover, makes explicit what other scholars and practitioners who refer only to child marriage often fail to: that a focus on the causes and consequences of child marriage for only the girl-child has implicitly applied a gendered lens. The use of this term makes explicit the assumption of differences between males and females and identifies the population of focus in much research. Krieger explains that a girl-boy distinction in health and medical research requires thinking beyond a biological division and engaging in the socially-constructed nature of gender, a concept only introduced in the 1970s . We furtForced marriage refers to a formal union without the free and full consent of both parties . In contWhile forced marriage may more clearly be distinguished from child marriage, the distinction with early marriage is less clear cut due to different interpretations on what “early” means. To some, “early marriage” serves as a euphemism that hides that children, a protected group, are involved in an act of marriage; moreover, the language of “child brides” romanticizes a problematic practice . To otheamong girls and women synonymously, to focus on marriages where the girl-child spouse is below the age of 18. We adopt the convention on the synonymous use of early marriage, defined by UNICEF as “the marriage of children and adolescents below the age of 18” to convey the prematurity of the union [The term “forced marriage” promotes consideration for the reasons a girl marries early, importantly providing additional context for not only who is affected but why. While acknowledging the variability of legal and social constructs, we propose the language of girl child marriage, or child or early marriage he union . We arguWith such possible variations in an understanding of girl child marriage, it is likely clear that measurement is imperfect. UN estimates use data from the DHS, UNICEF MICS, and other national surveys measuring child marriage as the “percentage of women 20-24 years old who were first married or in union” before 15 years and 18 years . This coGirl child marriage relies on self-reported data, which has raised concerns in its validity. A study in India that compared self-reported age at marriage to two calculated indicators – derived by comparing current age to months in marriage as well as current age to months since menarche and marriage – concluded that self-reported age at marriage was an adequate measure in the absence of additional data . AdditioFinally, although we acknowledge the convention of using self-reported data from DHS and UNICEF MICS to measure girl child marriage as a union before age 18, based on available data, we further acknowledge aspirations for future measures. Presumably, a binary cutoff of 18 years omits important information about the consequences of marriage at age 15 or age 12; consequently, several quantitative research studies look at age categories and how they relate to different socioeconomic and health outcomes. Others have recommended more complex indices that adapt from poverty measurement .3 We encWe have presented a theoretical argument defining and deconstructing “girl child marriage.” In doing so, we have articulated consideration for concepts of marriage, children, and gender, which we hope will inform future work particularly impacting the millions of women and girls today who have married before the age of 18. Just as the construct of girl child marriage has evolved over time, we posit that it will continue to evolve.Additionally, the use of different terms in different contexts may take on a range of meanings at a point in time. To focus only on “early marriage” would prove challenging both quantitatively and qualitatively due to a lack of consistency in how “early” is defined; as we discussed in this paper, “early” referred to age for some while it referred to maturity (independent of age) for others, and it is sensitive to a given context. To focus only on “forced marriage” may result in measuring a different construct and would be challenging due to a dearth of nationally-representative data capturing the extent to which girls’ and women’s marriages are forced, as determined by legal definition and girls and women’s experience; additionally, as we previously called for, more research is needed to better understand forced marriage. To use “adolescent marriage” or “teenage marriage” could result in narrowing the breadth of individuals who marry at younger ages, even in advance of entering adolescence or the teenage years.Our intent is to encourage more intentional use of language in global public health research, which we argue is lacking to-date. We hope this encourages global public health researchers to engage with the broader social, economic, political, cultural, and historical dimensions of key concepts examined and measured.


Patients are generally assumed to have the right to choices about treatment, including the right to refuse treatment, which is constrained by considerations of cost‐effectiveness. Independently, many people support the idea that patients who are responsible for their ill health should incur penalties that non‐responsible patients do not face. Surprisingly, these two areas have not received much joint attention. This paper considers whether restricting the scope of responsibility to pre‐treatment decisions can be justified, or whether a demand to hold people responsible for 'usual suspect' choices such as smoking or failure to exercise commits us to also holding people responsible for their treatment choices. I argue that there is no good reason to support this restriction: those who advocate responsibility for (some) pre‐treatment choices should also advocate responsibility for (some) treatment choices. However, I also note that, as with pre‐treatment choices, patients may sometimes have reason to choose in ways that do not optimize their health. As such, I also consider a process, based on the idea of public reasons, for deciding which treatment choices patients cannot legitimately be held responsible for, along with a method for considering proposed changes to this category. Retrieved from https://www.devonlive.com/news/devon-news/devon-man-who-nipple-removed-2540712 .Cooper, J. . Devon man who had nipple removed by 'Dr Evil' says he was 'really happy' with the work.  Choice is often constrained by budget: patients cannot choose treatments that are insufficiently cost‐effective. Nonetheless, within many jurisdictions patients do have some choice over the form of their treatment.2BMJ, 327, 542–545; Coulter, A. (2010). Do patients want a choice and does it work? BMJ, 341, c4989; Poole, N. (2016). A common law right to autonomy of treatment. Royal College of Surgeons Blog. Retrieved from https://www.rcseng.ac.uk/news-and-events/blog/the-right-to-autonomy-of-treatment-is-a-common-law-right/; Radhakrishnan, A., Grande, D., Ross, M., Mitra, N., Bekelman, J., Stillson, C., & Pollack, C. E. (2017). ‘When primary care providers (PCPs) help patients choose prostate cancer treatment. Journal of the American Board of Family Medicine, 30, 298–307; Royal College of Surgeons. (2018). Consent: Supported decision‐making. A guide to good practice. London: Royal College of Surgeons. The UK’s National Health Service recently outlined plans to significantly reduce a number of ‘ineffective’ treatments whose risks typically outweighed benefits, but elected to keep four such treatments available upon patient request. See BBC. . NHS England to stop ‘ineffective’ treatments’. Retrieved from https://www.bbc.co.uk/news/health-44665560. The NHS also offers patients with some conditions a degree of control over their treatment and care decisions with a Personal Health Budget .Say, R. E., & Thompson, R. (2003). The importance of patient preferences in treatment decisions – challenges for doctors.  Where they do not, there is scope to offer patients more choice, either by permanently expanding the list of treatments that are standardly offered, or by giving particular patients one‐off extensions because of their circumstances or values.In many healthcare systems, patients have a degree of choice over their treatment, including the option to refuse treatment altogether. This choice is subject to significant limits. It does not include treatment that is unnecessary and dangerous. In the U.K., body modification practitioner Brendan McCarthy (AKA ‘Dr Evil’) has recently been charged with grievous bodily harm for removing a client’s nipple, after the removal was refused by the NHS.and made different, healthier choices, you should be held responsible for the outcome. Depending on further considerations, this might take the form of treatment denial, lower‐priority access, additional financial costs following treatment, or additional taxation of unhealthy but avoidable behaviours. Indeed, such thinking may influence the practice of conditional access to healthcare, where patients are denied the full package of available care until they have taken certain preventive measures such as losing weight or quitting smoking. Although such policies are often justified by reference to effectiveness, in some cases there may be latent assumptions of responsibility underlying these policies.3Health Care Analysis, 27(2), 61–76.See Brown, R. (2019). Irresponsibly infertile? Obesity, efficiency and exclusion from treatment.  Moreover, some exclusionary policies are justified by reference to both patient obligations and costs to taxpayers.4Social Science and Medicine, 207, 46–54.Laverty, L., & Harris, R. (2018). Can conditional health policies be justified? A policy analysis of the new NHS dental contract reforms. The limit of cost‐containment raises a different issue. Some think that personal responsibility should play a role in healthcare allocation. According to proponents of this view, if you could have foreseen that your choices posed a risk to your health burden others. One form of this argument points to social harm: your unhealthy choice avoidably increases the healthcare costs to society at large.5Daedalus, 106(1), 57–80; Kluge, E. (1994). Drawing the ethical line between organ transplantation and lifestyle abuse. Canadian Medical Association Journal, 150(5), 745–746; Glannon, W. (1998). Responsibility, alcoholism, and liver transplantation. Journal of Medicine and Philosophy, 23(1), 31–49; Cappelen, A. W., & Norheim, O. F. (2005). Responsibility in health care: A liberal egalitarian approach. Journal of Medical Ethics, 31(8), 476–480; Buyx, A. M. (2008). Personal responsibility for health as a rationing criterion: Why we don’t like it and why maybe we should. Journal of Medical Ethics, 34(12), 871–874; Savulescu, J. (2018). Golden opportunity, reasonable risk and personal responsibility for health. Journal of Medical Ethics, 44(1), 59–61. For evidence on public support, see Ratcliffe, J. (2000). Public preferences for the allocation of donor liver grafts for transplantation. Health Economics, 9, 137–148; Berk, M., Gaylin, D., & Schur, C. (2006). Exploring the public’s views on the health care system: A national survey on the issues and options. Health Affairs, 25(1). https://doi.org/10.1377/hlthaff.25.w596; Traina, G., Martinussen, P., & Feiring, E. (2019). Being healthy, being sick, being responsible: Attitudes towards responsibility for health in a public healthcare system. Public Health Ethics, 12(2), 145–157. https://doi.org/10.1093/phe/phz009. See Wikler, D. (2002). Personal and social responsibility for health. Ethics and International Affairs, 16(2), 47–55 and Friesen, P. (2018). Personal responsibility within health policy: Unethical and ineffective. Journal of Medical Ethics, 44(1), 53–58 for critical discussions of the view.Knowles, J. (1977). The responsibility of the individual.  A second interpretation notes an individual harm: the treatment you require means that you take the place of a blameless individual, delaying or even obstructing their treatment.6Journal of Medical Ethics, 24, 231–236; Brudney, D. (2007). Are alcoholics less deserving of liver transplants. Hastings Center Report, 37(1), 41–47; Thornton, V. (2009). Who gets the liver? The use of responsibility as the tie breaker. Journal of Medical Ethics, 35, 739–742.Savulescu, J. (1998). The cost of refusing treatment and equality of outcome.  The most obvious case is in the example of transplant waiting lists where, at the extreme, being lower down on the list can result in premature death. But this individualistic argument may apply quite generally: whatever their size, health and social‐care budgets are limited. If the health budget has little elasticity, resources spent treating avoidable health problems cannot be spent on unavoidable ones. If the health budget is elastic, but the broader social‐care budget is not, the same issue arises but with respect to goods outside the health service. Only with an infinitely  elastic budget can we guarantee that treatment of those who are responsible for their health needs will not impact anyone with needs for which they are not responsible. In both cases, the thought is that giving equivalent healthcare to those who are responsible for their needs is an unjustified form of cost‐externalization.One justification for ‘responsibilisation’ is that those whose decisions generate avoidable health needs can be a genuine exercise of responsibility;generate additional, avoidable healthcare costs; andbe amenable to guidance and support because patients have access to the expertise of medical professionals.Surprisingly, there has been little discussion of the combination of these issues, namely responsibility for treatment choices. Responsibility advocates have tended to focus on decisions made prior to entering the health system . Yet choosing a less efficient treatment or refusing an effective treatment seem to sometimes:not be held responsible for choices regarding treatment. My conclusion is that this combination of views is not tenable. If we advocate that patients are held responsible for some pre‐clinical choices, we should also advocate that patients are held responsible for some treatment decisions. This is consistent with the view that ‘responsibilisation’ is justifiable in neither case, for example because we can never be sufficiently sure that someone is responsible for their condition, because the practical costs of finding out would negate any savings made, or because our health is insufficiently influenced by our individual choices.7Status syndrome: How your social standing directly affects your health and life expectancy. London, U.K.: Bloomsbury; Benzeval, M., Bond, L., Campbell, M., Egan, M., Lorenc, T., Petticrew, M., & Popham, F. (2014). How does money influence health? York, U.K.: Joseph Rowntree Foundation. Still, while this evidence demonstrates that it is overly simplistic to regard people as individually responsible for their health (taken as a whole), that does not mean that people cannot be responsible for individual choices that affect their health, so long as those choices are made under conditions that are conducive to autonomous decision‐making. In other words, while the literature on social determinants of health shows us that we should not hold people responsible for failing to achieve optimal health, it does not show that we cannot hold (some) people responsible for failing to make specific choices that will likely improve their health.For instance, one might point to research supporting the claim that our health is to a significant degree socially determined, e.g. Marmot, M. (2004). This paper considers whether this failure to extend the principles of responsibility to treatment choices is defensible, or mere myopia. I consider the plausibility of advocating that responsibility play a role in healthcare allocation for some pre‐clinical cases , while insisting that patients Having established this claim, the paper then considers two further issues. In Section 2not defensible, it is not the fault of patients but of policymakers and/or medical professionals. Either way it is unfair to penalize patients.One might think that this problem has little practical importance. Healthcare systems generally set efficiency limits for fundable treatments, and doctors have standards of care that determine which treatments are acceptable. Any choice a patient has is within those limits. If the limits are defensible, patients should not be held responsible for choosing between options the healthcare system offers. If the limits are refuse treatment altogether, even if this will lead to greater health needs in the future, for which the patient is entitled to care. There are exceptions to this – for instance, if a potential National Health Service (NHS) liver transplant candidate refuses help to stop drinking alcohol, they may be refused access to the transplant register8http://odt.nhs.uk/pdf/liver_selection_policy.pdf .NHS Liver Advisory Group (2017). Liver transplantation: Selection criteria and recipient registration, Section 2.1.1.5. Retrieved from  – but patients are not generally held responsible for past treatment refusals. It is worth noting in this context that a treatment refusal does not amount to a refusal to pursue any treatment, because some patients can pursue alternative treatments with private providers.9https://www.nhs.uk/conditions/homeopathy/, and it still funds acupuncture (https://www.nhs.uk/conditions/acupuncture/). The French government has announced its intention to stop reimbursing patients for homeopathy, but will not do so until 2021. See https://www.reuters.com/article/us-france-health-homeopathy/france-will-end-healthcare-refunds-for-homeopathic-drugs-idUSKCN1U42B6.In fact, it is only recently (2017) that the National Health Service in England and Wales stopped funding homeopathy. See However, this does not generally apply to the decision to moral or religious objections to treatments ; they may have different opinions (informed or not) about the effectiveness of treatments or the risk of side‐effects (e.g. concerns about vaccinations); and where cost‐effectiveness is estimated at the population level, patients may have unusual personal circumstances or preferences that make a different treatment overall preferable. For instance, where treatments are judged less effective when they risk giving patients certain disabilities, some patients may be less concerned about developing a disability,10Utilitas, 31, 191–202.Davies, B. (2019). Bursting bubbles? QALYs and discrimination.  leading them to consider treatments that are deemed inefficient.Additionally, the range of available treatments for any particular condition could be broader or narrower than it is in any particular medical jurisdiction. When we have alighted on a range of efficient treatments, some patients will want treatments outside this range. Patients may have 11BMJ, 319, 753–756.Elwyn, G., Edwards, A., Gwyn, R. & Grol, R. (1999). Towards a feasible model for shared decision making: Focus group study with general practice registrars. In all such cases, we either already accept patients choosing significantly less efficient treatment options, or we could do so. And in all cases, we must decide whether the costs of those choices – if allowed – should fall on the patient or on others. In addition, it is worth considering the reasons for which doctors should offer a choice over treatment. Should doctors prioritize the treatment with the best expected outcome, offering patients a choice only when they are themselves uncertain about what is best? Or should patients be standardly offered a range of ‘good enough’ treatments, even when medical opinion suggests that one is clearly preferable?12Journal of Medical Ethics, 43(12), 831–840.Nair, T., Savulescu, J., Everett, J., Tonkens, R., & Wilkinson, D. (2017). Settling for second best: When should doctors agree to parental demands for suboptimal medical treatment?  Such a case could clearly also occur for a patient making decisions about their own treatment, rather than about someone else’s. Similarly, Savulescu considers various alternatives to blood transfusions proposed by Jehovah’s Witnesses and concludes that it may be justifiable to reject claims to these alternatives if they force others to forego care.13Savulescu, op. cit., note 6. In both cases, we can rule out forcing patients to undergo optimal treatment but insist that their choice in the public health system is between this treatment and no treatment at all.Certain limits on patient choice are obviously objectionable. Take the view that patients have no right to refuse treatment at all: they must simply do what is best for their health, or accept it being done to them. This would involve violations of the basic right to bodily integrity, because ignoring a patient’s wish not to undergo a treatment would involve forcing it upon them. However, it is still possible to advocate more moderate versions of this view. Even though treatment cannot be physically forced on patients, they may nonetheless be refused ‘sub‐optimal’ treatments. For instance, Nair et al. describe a case in which a child’s parents are unhappy with a treatment that contains pork‐derived ingredients, where a bovine‐derived replacement is available but less effective.prima facie case for treating them equivalently with respect to responsibility. This section considers three possible disanalogies between the two types of choice which might support the claim that, while we can hold people responsible for pre‐clinical choices, we cannot do the same for treatment choices.Because both pre‐clinical and treatment choices can foreseeably generate avoidable burdens, there is a 2.114Utilitarianism and on liberty (pp. 88–180). Oxford, U.K.: Blackwell, p. 152. See also Cowart, D., & Burt, R. (1998). Confronting death: Who chooses? Who controls?’ Hastings Center Report, 28(1), 14–24.Mill, J. S. (1859/2003). On liberty. In M. Warnock (Ed.),  Whether I opt for the treatment my doctor recommends is, ultimately, my choice (though perhaps I have some obligation to consider the impact on my nearest and dearest). Yet just as apparently self‐regarding choices outside of clinical settings may end up having an impact on others if medical treatment is required, so too can refusals within clinical settings. A treatment refusal may impact others if it leads to greater health needs, and if the patient makes a claim for those new needs to be met. Choosing sub‐optimal treatment  can lead to worse health.One possible defence of the distinction between pre‐clinical behaviours and treatment choices is to say that the latter are ‘self‐regarding’.2.215A. Caplan cited in Glannon, op. cit., note 5, p. 42. The case for holding patients responsible for their treatment choices requires that the outcomes of those choices are reasonably foreseeable, for example through prognosis. This in turn presupposes that we can be sufficiently confident in prognosis to warrant penalty for failure to follow medical advice: if medical advice is not sufficiently well‐evidenced, then while it may nonetheless be prudent to follow such advice (assuming it is better than random guesswork) it may not be legitimate to penalize failure to do so.A second possible difference between everyday choices and choices of medical treatment might be that we do not usually have sufficient knowledge to say which treatment is the best course of action.t has sufficient risk of causing a particular health burden; but we do have the equivalent knowledge of at least some behaviours. For instance, we know that smoking daily has a very considerable risk of causing lung cancer.Those who want to defend a distinction between the two types of choice might claim that we lack sufficient knowledge of the effects of medical care to justify the claim that refusing treatment 16BMJ, 345, e5843; Frayling, T. (2012). Are the causes of obesity primarily environmental? No. BMJ, 345, e5843.Wilding, J. (2012). Are the causes of obesity primarily environmental? Yes. If this were true, it would be an important practical objection to the claim that things are equivalent with respect to responsibility for treatment choice and other kinds of behaviour, though this would be an objection that is highly contingent on our current state of knowledge. However, this is not an essential difference between choices about treatment and other behaviours. For instance, while we may have good evidence about the causal relationship between smoking and cancer, things are far less clear with respect to relationships between other ‘usual suspect’ behaviours and apparently related health conditions, such as the link between diet and obesity.best choice – an unreasonable demand if even medical professionals disagree on what that choice is – and demanding that they make only reasonable choices. The latter is consistent with some uncertainty in prognosis.In addition, as I outline in Section 2.317Savulescu, op. cit., note 5. is to hold people substantively responsible only in carefully controlled conditions, for example when they have had their options carefully explained to them, when they are in a reasonable mental state to make an informed choice, and when we can rule out their having good reasons to avoid making the best choice for their health. This raises the possibility of a second objection to my claim, namely that such a mechanism is not possible for treatment decisions.One objection to the practice of holding patients responsible even for pre‐clinical choices is that people are generally not in the right conditions to exercise sufficient responsibility for their health‐affecting choices. A possible response to this18Journal of Medical Ethics, 44, 53–58.Friesen, P. (2018). Personal responsibility within health policy: Unethical and ineffective’  result from decisions that are not typically made with such advice available, or in such a controlled setting. In this respect, then, treatment decisions seem to be a more appropriate subject of responsibility than standard behavioural decisions. Of course, this also emphasizes that if we are to hold people responsible for their treatment decisions, it must be clear not only what the medical risks are, but also what the institutional risks are. For example, if we pursue a policy of giving patients lower priority for conditions for which they have already refused treatment, that must be made clear to the patient at the time of choice.In one sense, decisions about treatment are better placed to meet the requirements of responsible choice. After all, such decisions take place partially in a clinical setting, where medical professionals are already on hand to explain the options to patients. Behaviours that are typically leapt on by advocates of responsibility, such as smoking, drug use, and poor diet,But one might object that treatment decisions are often made at times of heightened vulnerability and sensitivity. The decision about which cancer treatment to pursue, for instance, is a fraught one, wrapped up in the emotional baggage of having the disease, of worrying about the effect on one’s family and friends, on work, and on one’s identity. It may seem unduly harsh to penalize people for making unwise choices in such circumstances.at least equivalent case for holding people responsible for some treatment decisions, compared with holding them responsible for non‐clinical choices. I thus make two observations about this concern. First, pre‐clinical choices are also often driven by emotions such as stress, unhappiness and fear. It is difficult to argue that this is never equivalent to the emotional difficulties caused by facing a disease.However, my claim in this section is simply that there is an exceptions to a policy of holding patients responsible, or for establishing a threshold of emotional pressure above which patients cannot be held substantively responsible. We typically assume that responsibility requires a degree of control.19Responsibility and control: A theory of moral responsibility. Cambridge, U.K.: Cambridge University Press.Fischer, J. M., & Ravizza, M. (1998).  To the extent that emotional pressures make it difficult to choose well, this undermines the control condition on responsibility.Secondly, assume that some conditions are so emotionally difficult that patients cannot be regarded as sufficiently responsible when making treatment choices. This provides a case not for refusing to regard treatment decisions as equivalent to non‐treatment decisions with respect to responsibility, but for creating 3justified in making choices that (foreseeably and avoidably) harm your health. Health is not the only good thing in life; you can reasonably trade off losses in health against other gains. And your life is not the only one that matters; you can reasonably trade off losses in your health against gains to others. In some such cases, we cannot reasonably insist that patients be penalized for making reasonable choices (particularly where those choices are forced on them by others or by circumstance).Even if you should be held responsible for health burdens that emanate from your choices, we must also accept that you can sometimes be This is no less true when it comes to decisions about treatment. A treatment that maximizes health may lead to other costs that are unacceptable to a reasonable patient. To rule out patient choice entirely would imply that patients have an obligation to maximize (expected) health whenever not doing so would lead to greater treatment. But such an obligation is hard to justify.and to avoid incurring such costs by preventing people from carrying out such unreasonable decisions. Or we can take a responsibility‐friendly approach, allowing people to choose as they wish, but insisting that any costs incurred must fall on them. I consider these positions in Section However, this does not mean that patients have an unlimited claim to any treatment they desire. Even if there is no obligation to optimize health, we should not impose unreasonable costs on others. This section considers how we might draw this distinction. If this distinction can be drawn in a non‐arbitrary way, we then face a choice with respect to those who seek to make medical decisions that carry unreasonable costs. Either we can seek to avoid imposing responsibility medically optimal for good reasons. Health is not the only thing of value, and reasonable people can disagree about whether a particular trade‐off between goods is worthwhile. Moreover, people can reasonably prefer a worse life in order to improve the lives of others. Many liberals20A theory of justice. Cambridge, MA: Harvard University Press.Rawls, J. (1971).  propose that the state ought to remain neutral in these sorts of cases, and not disadvantage people on the basis of their idiosyncratic conceptions of the good. At least on a straightforward reading, that prohibition might seem to cover penalizing patients for their idiosyncratic medical preferences.Clearly, patients can refuse treatment that is 21An anonymous reviewer notes that a single moral value or principle might lead a patient to ‘unreasonably’ refuse a particular treatment, but also to adopt a lifestyle that is healthier than average. Such a patient might therefore end up generating fewer healthcare costs than they would have without this value. This is an important point in the overall context of justifying applying penalties on the basis of patient choices; but it is nonetheless true that a particular choice can be unreasonable even if it emanates from overall reasonable values. This raises the possibility that, while we must accommodate patients who refuse treatment on the basis of reasonable values and preferences, patients who refuse treatments unreasonably need not be allowed to do so. In a system that standardly offers patients a particular range of treatment options, such a policy might require that (a) patients explain the reasoning behind a decision to refuse any of those options ; (b) we have justifiable standards by which to judge the reasonableness of this reasoning; and (c) we have a procedure by which to apply these standards that is visibly procedurally fair.22Setting limits fairly: Learning to share resources for health. Oxford, U.K.: Oxford University Press.Daniels, N., & Sabin, J. (2002) Still, liberals typically include the caveat that the tolerated views must be ‘reasonable’.reasons to the decision they are making. Although we may want patients to make decisions based on good reasons, if patients choose a reasonable option, it may be irrelevant whether they choose for good reasons.I will focus on the second and third of these three requirements, but it is worth briefly addressing the first. Requiring that patients explain their reasoning when requesting non‐standard treatment risks adding an additional layer of bureaucracy to medical decision‐making. One way to reduce this burden would be to shift the burden of reasonableness from the patient’s extensions of the standard care options, there is a danger to this approach. A focus on decision types (e.g. to receive a bovine‐based vaccination rather than a pork‐based one) means that individual cases set a universal precedent, expanding the range of standard treatment options for everyone, indefinitely. Sometimes, it is reasonable to grant exemptions to general rules for some individuals but not for others. And if our initial justification for the practice of allowing exemptions is that some exemptions are reasonable, we must also acknowledge that other exemptions – even relating to the same treatment option for the same condition – could be unreasonable. This is an issue of whether we want to see this process as one of granting individual exemptions, or one of challenging the range of accepted treatments. In practice, both characterizations may be appropriate in different cases; but the difference is significant enough that it warrants different approaches.However, because we are considering 23Journal of Medical Ethics, 26, 358‐362.Huijer, M., & van Leeuwen, E. (2000). Personal values and cancer treatment refusal.  This issue will be exacerbated in cases where the justification for refusal is simply a brute preference. For instance, a patient may have a fear of staying in hospital. Even if we – and the patient – recognize that the fear is phobic, and so in some sense unreasonable, the patient will still find an extended hospital stay distressing, and hence overall worse for her welfare than an otherwise less effective treatment. Whether such a justification counts as ‘reasonable’ is a complex question, and one on which intuitive responses can easily be led astray.A further restriction on this proposal is the ability of patients to articulate their reasons. Even patients who have reasonable grounds may struggle to articulate those grounds in a way that will satisfy adjudicators.The issue of articulation is also exacerbated because many patients in this situation will be seriously unwell. Patients who are sufficiently competent to form reasonable preferences about treatment may nonetheless find it difficult to express those preferences coherently because they are upset by their ill heath, and by the prospect of their preferences being refused. Additionally, forcing patients to undergo a process by which they justify their preferences may cause unwarranted additional stress.24Political liberalism: Expanded edition. New York, NY: Columbia University Press, p. xvi.Rawls, J. (2005).  namely a complete picture of value that a person holds. For a doctrine to be reasonable, however, it is only required that it addresses central aspects of life ‘in a more or less coherent and consistent manner’; that it offers some practical sense of what is centrally valuable in life, and of how to resolve clashes between competing values; and that it is subject to some adjustment in the light of good reasons . Clearly, this understanding of reasonableness is largely formal rather than substantive; that is, it concerns how beliefs are reached and maintained rather than what they are. Rawls does offer some substantive constraint in the form of the idea of the ‘reasonable citizen’, who is willing to engage in fair terms of cooperation in society so long as others are as well. This may rule out some substantive views (e.g. deeply bigoted ones) but will leave a great many standing.25Rawls’ approach is not designed to apply to anything so specific as people’s preferences over healthcare decisions. The point of considering his approach is simply to note that if we define reasonableness, as Rawls does, in a largely formal and permissive way, we will not get very far in ruling out particular choices as unreasonable.Turning to the standards of reasonableness, although many writers in the liberal tradition place a constraint of reasonableness on views between which the state must remain neutral, the conception of reasonableness typically used is a broad one, leaving considerable space for a wide, varied pluralism of values. For instance, Rawls offers the notion of a ‘reasonable comprehensive doctrine’,26Liberalism without perfection. Oxford, U.K.: Oxford University Press, p. 256.Quong, J. (2010).  Even if individuals have additional reasons – based in more comprehensive versions of the truth as they see it – for their preferences, they must be capable of being justified on the basis of reasons that anyone who is minimally motivated could accept as reasonable, even if they ultimately disagree.27As Quong notes, Rawls sees the idea of public reason as applying only to the formation of the basic structure of society. Quong, however, argues that ‘the idea of public reasons…should regulate all the political decisions in a liberal democratic society’ .A more promising approach to reasonableness lies in the idea of public reason, also discussed by Rawls, amongst others. One ideal of public reason is that where people want to direct public policy , their preferences must be justifiable by reasons that ‘each person can reasonably endorse in their capacity as a free and equal citizen’.28Savulescu, op. cit., note 6. but reject someone else’s preference – also borne of a sincerely held doctrine – for homeopathic rather than pharmaceutical treatment for their cancer.One advantage of this approach is that it allows us to translate, to some degree, the otherwise irresolvable problem of evaluative disagreement into an issue of reciprocity. In medicine, there is not always a single treatment option that is uncontroversially best; even doctors may disagree on which course is best, or even over whether a particular choice is reasonable. I may think that the idiosyncratic preferences of others are irrational, and that my own idiosyncratic preferences are as‐yet unrecognized pearls of wisdom. On this basis, I might prefer a medical system that responds to my preferences, but which does not require me to fund others’ preferences: for instance, I may be a Jehovah’s Witness who believes that it is entirely reasonable for me to refuse blood transfusions in favour of more expensive alternatives,unreasonable, rather than that each individual demonstrate the reasonability of their suboptimal treatment preferences.Further, while each individual might prefer not to support the idiosyncratic preferences of others at additional cost, we can all recognize the benefits of having a space to pursue our preferred way of life, where having such a space includes the collective shouldering of reasonable costs incurred. As such, it is preferable to require that those who would wish not to accept additional costs as a result of someone’s decision demonstrate that it is 29pluralistic model that responds to different values and beliefs; indeed, given the liberal aim of accommodating as many reasonable views of the good as possible, this seems likely. The question, in this context, is rather about offering reasons for the externalization of special, and avoidable, costs.This does not mean, however, that cultural and religious differences are to be ignored entirely. As I suggest below, in some cases such a difference can be reasonably accommodated because the degree of difference in medical efficacy or cost is not significant. The result of an appeal to public reason might be a  nor to unproven empirical claims, to back up my view.Yet I must also recognize that others feel the same: they would rather run things according to their preferences, ignoring the parts of my set of values that they regard false. We can each recognize that there is no unassailable claim to epistemic authority. In order to avoid my preferences being ignored entirely, I must be prepared to submit them to the same test as others’ preferences. The idea of publicly available reasons is one such test. I cannot appeal to considerations which, while I regard them as obviously true, can be reasonably rejected by others. For instance, I cannot appeal to specific religious doctrines,features of their case; it is simply that these special features must do equal justifying work in all similar cases. For instance, if Jehovah’s Witnesses appeal to religious conscience to justify their access to more expensive alternatives to blood transfusion, this must be compatible with equivalent religious exemptions for other groups.This approach does not require a significant level of substantive moral agreement amongst individuals. Rather, it requires that individuals cooperating in a single system justify proposed changes to that system in terms that everyone can in principle understand and reasonably endorse. That means that individuals cannot appeal for special exemptions; they must justify proposed changes on the basis of reasons that in principle apply to all. However, it does not mean that people cannot appeal to special 430The Oxford handbook of political theory (pp. 488–506). Oxford, U.K.: Oxford University Press.Williams, A. (2008). Liberty, equality and property. In J. Dryzek, B. Honig & A. Phillips (Eds.),  The first is to reduce the amount of freedom that people have to make such choices. The second is to retain the freedom to choose but reduce the degree to which the costs of such choices are externalized. The policy described in the previous section involves a method to identify when externalized costs are unjustified. A complete proposal thus needs to decide how to treat claims that fail to pass the test of public reasons. Some patients who fail this test will accept the result. But others will not: they will want to continue with their preferred treatment option even though it has been rejected as unreasonable.Andrew Williams describes how, when the costs of certain choices are being unjustifiably externalized (i.e. borne by those who did not make the choice), we face two options.t, additional complications may arise, and existing health problems may be exacerbated. In some such cases, costs will be higher, but there is a practical challenge in estimating precisely how much of the additional cost is down to the patient’s refusal. Presumably, we will have to rely on prognoses with and without treatment, though this will never be exact.One option is to allow the patient to choose as they wish but insist that patients must bear the burden of their unreasonable choices. For instance, we might allow patients to fund the difference in cost of more expensive treatments themselves. In cases of blood transfusion, this is straightforward, albeit costly: there are alternative treatments, but they are much more expensive. In other cases, though, things are less clear. One way that refusing a treatment might lead to higher costs is by leading to additional health needs (much) later. If a patient refuses treatment at time There are obviously further questions about how far this principle should extend. Should my decision to refuse a treatment affect my rights to further treatment for the same condition a decade later? What about a separate condition, which may have been influenced by the first? We may worry that this risks moving from reasonable cost‐containment to an effective lifetime’s punishment for one mistake. Nonetheless, these are also issues that affect more standard accounts of responsibility in healthcare. Behavioural decisions made now can have health effects decades from now. We could recognize parity between clinical and non‐clinical decisions while still maintaining, for example, that there is a statute of limitations on how far in the future responsibility may be held; that there is a floor of severity below which responsibility should not apply; and that ordinary conditions of choice are not sufficient for holding patients responsible in this way.not responsible for the patient’s choices or preferences, suffering the fallout.A second option is to say that once a treatment option has been ruled out, it is ruled out whether or not the patient is willing and able to fund it. This option may receive support from considering the matter from a less individualistic perspective. A policy of allowing patients to make unreasonable treatment choices but then insisting that they bear the costs does not only affect the individual patient: poor health has emotional, social and financial implications for those around the patient as well. If we simply refuse to allow people to make unreasonable treatment choices, for example by banning public providers from offering such treatments even out of the patient’s own pocket, and perhaps even banning private provision of such treatments, we reduce the risk of those around the patient, who are If a treatment option is positive , and essentially involves taking excessive risks, the state may rule it out not by placing any restrictions on the patient’s behaviour, but by placing restrictions on the behaviour of others. The McCarthy case is of this general type, though it does not even involve a kind of treatment, but a medical procedure for a non‐medical purpose. Nonetheless, this might also be applied to some treatments that may benefit a genuine medical problem, but which are overly risky. In this case, the burdens the patient must bear are health burdens generated by failure to treat a medical condition. However, this proposal faces clear limits, given the possibility of simply refusing treatment altogether. Some patients who cannot access their preferred treatment option will simply accept what is available. But others will prefer not to receive treatment rather than accept what is on offer, and their health will suffer as a result. If the patient’s preferred option is to be left alone, we cannot regulate such an option away because this would involve the violation of a patient’s basic right to bodily integrity.Perhaps a better way to mitigate the effect on individuals other than the particular patient is to place limits on the types of penalty for which a patient’s choices can make them liable. For instance, we might say that even if a patient’s severe health needs can reasonably be traced back to their unreasonable treatment preferences, they should not be refused basic care, but may have to make a greater financial contribution (dependent on ability to pay) towards the cost of that care.5within the clinical setting, specifically decisions about which treatment route to take, if any. While choice of treatment is typically seen (within limits) as being ultimately the patient’s private business, unreasonable treatment demands can have an impact on others equivalent to that seen in more standard cases of health‐affecting behaviours. While I have not endorsed the introduction of responsibility as a criterion for decisions about treatment (or indeed other kinds of choice), I have suggested that the idea of public reason may help us to regulate the types of treatment to which we are standardly entitled in a public health service, as opposed to types of treatment for which we need to make a special case and which, if that is unsuccessful, we can potentially be held responsible for choosing. Whether this proposal is ultimately practicable depends on further questions about the nature of responsibility, and our ability to detect it. But insofar as these questions affect responsibility as a criterion quite generally, they do not present a special obstacle to holding people responsible for some types of treatment decision.Proponents of introducing responsibility as a rationing criterion for healthcare tend to focus on decisions made outside of the clinical setting. I have argued that these ‘usual suspect’ choices are not special, and that the same case can be extended to decisions made The author declares no conflict of interest.