Background and aim: Lung cancer is the leading cause of cancer incidence and mortality in Canada. Population-based screening programs using low dose computed tomography are being more widely used. Screening reduces lung cancer mortality. It also introduces potential ethical issues that need to be elucidated to inform the ethical, equitable, and effective implementation of screening programs. This aim of this research was to begin developing an understanding of what the ethical issues are and how they are being, and should be, approached in health policy. Methods: Using empirical ethics inquiry, this research produced descriptive evidence via three independent studies: a systematic literature review and mixed methods integrative synthesis of public perspectives on screening benefits and harms, and two qualitative description studies about public and key informants’ ethical and social values on ethical issues in screening. Results: The major finding of this research was the preponderance of ethical issues located within health and social systems and structures, including equity of screening access, stigma against people who currently smoke commercial tobacco, commercialization of tobacco, and the need for increased investment in primary prevention of lung cancer. These ethical issues reflect the social, economic, and political determinants of lung cancer and the means available to reduce the burden of lung cancer in Canada, including but not limited to screening. In health policy, there was a lack of ethical frameworks or principles currently being used to address these ethical issues and the sometimes-conflicting perspectives found between the public and key informants. Discussion: Future empirical and normative research is needed to understand ethical and social values related to screening by populations with high lung cancer incidence and mortality, and to integrate empirical evidence with appropriate ethical theories to make recommendations for ethical, equitable, and effective population-based LDCT lung cancer screening policy in Canada. / Thesis / Candidate in Philosophy / Lung cancer is the top cause of cancer in Canada. An estimated 30,000 people were diagnosed with lung cancer and 20,700 people died from lung cancer in 2022. Screening is being more widely used to find and treat lung cancer in earlier stages. There are some ethical questions to consider, like how to ensure that screening programs are fair and effective. This research focused on understanding what the ethical issues are and how they could be solved in health policy. Perspectives on ethical issues were collected and analyzed from the public and lung cancer screening leaders. The two major ethical issues were fair access to screening and stigma against people who currently smoke commercial tobacco. There was a lack of ethical guidance to address these issues in health policy. Ethical concepts about justice and individual choice, and ethics research with key communities, may help navigate ethical issues in health policy.

Thesis (DPhil (Philosophy))--University of Stellenbosch, 2010. / ENGLISH ABSTRACT: This dissertation has two quite separate and rather different starting points. The first centres on the significant renaissance of virtue ethics as a moral theory that has occurred in the last 50 years. The second starting point is embedded in the recent discourse about the need for an ethical framework for public-health policymaking. (Up until now the ethical theories of deontology, manifested as either a ‘principlebased’ or ‘human-rights’ approach, and utilitarianism, have provided the theoretical background to this discourse.) When these two starting points fuse, the question arising – can character or virtue ethics contribute positively to the moral debates surrounding many vexing public-health issues? – seeks an answer. Broadly speaking, the ethics of public-health policymaking deals with ethical issues that occur within the macro-environment and that arise out of relationships between entities other than individuals, for example, states, regions, institutions, etcetera, and the policies in terms of which these interactions are regulated. Public health ethics ‘seeks to find a balance between the notions of ‘common good’ or ‘public interest’ and individual autonomy. I plan to investigate whether a virtue-based ethics, -which is concerned with a notion of human flourishing that is not primarily atomistic but intricately linked to the mutual well being of others and to notions of what the ‘good life for man’ means within the context of a shared history and connectedness with fellow human beings,- could contribute positively to current ‘public health ethics’ discourse. I believe that an exploration of the ethical basis of public health decision-making, focusing particularly on virtue ethics, but also examining other approaches like utilitarianism, principlebased approaches and the human-rights approach, will make a positive and original contribution to this area of philosophical discourse. Chapter one is an introduction which provides the rationale and motivation for the dissertation and briefly introduces the layout of each subsequent chapter. Chapter two is a concept analysis of ‘public health’ and justifies why I argue that the concept of public health is contingent, and ought to be contingent on an inextricably linked, and context appropriate concept of social justice. In this chapter I clarify the scope of the concept of public health used for this dissertation. Chapter three is an in-depth literature review of virtue ethics and similarly the next chapter is a literature review of the current status of public health ethics. Chapter five is entitled “Virtue Ethics, Social Justice and Public health”. My overall aim in this dissertation is to consider if virtue ethics as a moral theory can contribute positively to the practice of public health and thus by inference to an underlying concept of social justice. This receives in-depth consideration in this chapter. In chapter six I explore virtue theory in relation to public health from various other perspectives. In particular I return to MacIntyre to consider his concept of a ‘practice’1 which I apply specifically to the domain of public health, exploring the concepts of “extrinsic goods” and “intrinsic goods”, and how they translate to the practice of public health. Chapter VII is entitled “Theory and Practice: Critical Perspectives”. In this chapter I explore the challenges of adapting philosophical theory to actual context. I focus particularly on the problems of public health policy within a Southern African context. I conclude this dissertation by conceding that while virtue ethics can indeed make a positive contribution in some respects, its applicability is largely limited to public health problems that pertain to specific localised contexts. It has very limited applicability as an ethical theory or framework for trans-global public health issues, and public health issues influenced by global politics and economics. / AFRIKAANSE OPSOMMING: Hierdie verhandeling het twee heeltemal afsonderlike en taamlik uiteenlopende uitgangspunte. Die eerste handel oor die beduidende oplewing in deugde-etiek as 'n morele teorie oor die afgelope 50 jaar. Die tweede uitgangspunt is veranker in die onlangse diskoers oor die behoefte aan 'n etiese raamwerk vir die bepaling van openbaregesondheidsbeleid. (Tot dusver het die etiese teoriee van deontologie, hetsy in die vorm van . 'beginselgegronde' of 'menseregte'-benadering, en utilitarisme as teoretiese grondslag vir hierdie diskoers gedien.) Wanneer hierdie twee uitgangspunte egter byeenkom, ontstaan die vraag: Kan karakter- of deugdeetiek 'n positiewe bydrae tot die morele debatte oor talle netelige openbaregesondheidskwessies lewer? Oor die algemeen handel etiek in die bepaling van openbaregesondheidsbeleid oor etiese kwessies in die makro-omgewing wat ontstaan vanuit die wisselwerking tussen entiteite anders as individue, soos state, streke en instellings, en die beleid wat hierdie wisselwerking reguleer. Openbaregesondheidsetiek is daarop uit om 'n balans te vind tussen die konsepte 'algemene welsyn' of 'openbare belang', en individuele outonomie. Hierdie ondersoek beoog om vas te stel of 'n deugdegegronde etiek 'n wat gemoeid is met 'n konsep van menslike welstand wat nie grootliks atomisties is nie, maar ten nouste verband hou met die onderlinge welstand van ander, en 'n begrip van 'die goeie lewe' in die konteks van 'n gedeelde geskiedenis en verbondenheid met ander mense 'n positief tot die huidige diskoers oor 'openbaregesondheidsetiek' kan bydra. Die navorser argumenteer dat 'n ondersoek van die etiese grondslag van besluitneming oor openbare gesondheid, met 'n bepaalde klem op deugde-etiek, dog ook 'n nuwe bydrae tot ander benaderings soos 'n utilitaristiese benadering, beginselgegronde benaderings en die menseregtebenadering, 'n positiewe en oorspronklike bydrae tot hierdie filosofiese diskoers (kan) lewer. Hoofstuk 1 bied 'n inleiding wat die beweegrede en motivering vir die verhandeling uiteensit, en verduidelik kortliks die uitleg van elke daaropvolgende hoofstuk. Hoofstuk 2 is 'n konseptuele ontleding van 'openbare gesondheid', en ondersteun die navorser se betoog dat die konsep van openbare gesondheid afhanklik is en afhanklik behoort te wees van . kontekstoepaslike begrip van sosiale geregtigheid wat onlosmaaklik daarmee verbind is. In hierdie hoofstuk word die betekenis en omvang van die begrip 'openbare gesondheid' soos dit in hierdie verhandeling gebruik word, ook verduidelik. Hoofstuk 3 bevat 'n omvattende literatuuroorsig van deugde-etiek, terwyl die daaropvolgende hoofstuk eweneens 'n literatuuroorsig van die huidige stand van openbaregesondheidsetiek behels. Hoofstuk 5 is getiteld 'Deugde-etiek, sosiale geregtigheid en openbare gesondheid'. Die oorkoepelende doelwit van hierdie verhandeling is om daaroor te besin of deugde-etiek as 'n morele teorie positief tot die praktyk van openbare gesondheid, en dus ook tot 'n onderliggende konsep van maatskaplike geregtigheid, kan bydra. Dit word omvattend in hierdie hoofstuk bespreek. In hoofstuk 6 ondersoek die navorser deugde-teorie met betrekking tot openbare gesondheid uit verskeie ander oogpunte. Die studie konsentreer in besonder op MacIntyre se konsep van . 'praktyk',2 wat bepaald op die gebied van openbare gesondheid toegepas word om so die begrippe 'ekstrinsieke goedere' en 'intrinsieke goedere', en hoe dit in die praktyk van openbare gesondheid omgesit word, te bestudeer. Hoofstuk 7, getiteld 'Teorie en praktyk: Kritiese perspektiewe', bevat . ondersoek van die uitdagings om filosofiese teorie by die werklike konteks aan te pas. Die navorser konsentreer veral op die probleme van openbaregesondheidsbeleid in Suider-Afrikaanse verband. Die verhandeling sluit af deur toe te gee dat, hoewel deugde-etiek inderdaad in sommige opsigte 'n positiewe bydrae kan lewer, die toepaslikheid daarvan grootliks tot openbaregesondheidsprobleme in bepaalde gelokaliseerde kontekste beperk is. Dit het 'n uiters beperkte nut as 'n etiek-teorie of raamwerk vir globale openbaregesondheidskwessies, en openbaregesondheidskwessies wat deur die wereldpolitiek en -ekonomie geraak word.

This dissertation explores tensions between individual freedom and institutional authority. Chapter one examines public perceptions of the legitimacy of "new frontier" public health measures. I present results from a national survey of 1,817 adults concerning the acceptability of public health interventions for noncommunicable diseases. We found that support for these interventions is high overall; strongly associated with race and political orientation; and tied to perceptions of democratic representation in policy making. There was much support for strategies that enable people to exercise healthful choices, but considerably less for more coercive measures. These findings suggest that the least coercive path will be the smoothest. Additionally, the findings underscore the need for policy makers to involve the public in decision making, understand the public's values, and communicate how policy decisions reflect this understanding.

The 2003 Severe Acute Respiratory Syndrome (SARS) outbreak in Canada highlights a broad range in ethical challenges, particularly in priority setting. Presently, a leading theory in ethical priority setting is Daniels’ and Sabin’s Accountability for Reasonableness (A4R), which enhances fair and legitimate procedural decision making in typical healthcare settings. A4R attempts to mitigate conflicting interests and facilitate fairness in deliberations over priority setting issues. Whether this framework may be applied to public health emergencies has yet to be examined. This qualitative study describes the outbreak through the lens of A4R and explores the applicability of A4R in atypical or emergent circumstances. Findings from 25 structured key informant interviews of public health officials suggest refinements to the framework may be required for emergency events. The presence of such a framework may minimize collateral damage during and after a response. The lessons may guide future preparedness efforts such as pandemic planning.

The 2003 Severe Acute Respiratory Syndrome (SARS) outbreak in Canada highlights a broad range in ethical challenges, particularly in priority setting. Presently, a leading theory in ethical priority setting is Daniels’ and Sabin’s Accountability for Reasonableness (A4R), which enhances fair and legitimate procedural decision making in typical healthcare settings. A4R attempts to mitigate conflicting interests and facilitate fairness in deliberations over priority setting issues. Whether this framework may be applied to public health emergencies has yet to be examined. This qualitative study describes the outbreak through the lens of A4R and explores the applicability of A4R in atypical or emergent circumstances. Findings from 25 structured key informant interviews of public health officials suggest refinements to the framework may be required for emergency events. The presence of such a framework may minimize collateral damage during and after a response. The lessons may guide future preparedness efforts such as pandemic planning.

Ce mémoire de maîtrise tente de répondre à la question suivante : quelle est la valeur de l’autonomie dans le domaine de la recherche biomédicale, et plus particulièrement dans le contexte des biobanques? Pour éclairer cette question, nous étudierons le concept d’autonomie dans deux domaines d’éthique appliquée : l’éthique de la recherche et l’éthique de la santé publique. Depuis la deuxième moitié du XXe siècle, le respect de l’autonomie individuelle est un principe programmatique de l’éthique de la recherche. Or, sa conceptualisation a été accusée d’être trop individualiste pour répondre aux enjeux qui caractérisent la recherche en santé d’aujourd’hui. En éthique de la santé publique, au contraire, l’autonomie individuelle prend une place moins prépondérante et fait droit à des dimensions sociopolitiques de l’autonomie qui ont été négligées par le domaine de l’éthique de la recherche. Ces dimensions mettent en lumière le rôle des institutions dans la promotion de l’autonomie tout comme l’importance pour les individus d’avoir la possibilité de participer à l’élaboration des politiques de santé qui les concernent pour réaliser leur autonomie. Le cas de la recherche en contexte de biobanques sera l’occasion d’appliquer ces différentes conceptualisations de l’autonomie à un domaine de recherche en pleine expansion qui se situe au carrefour de l’éthique de la recherche et de l’éthique de la santé publique. / This master's thesis attempts to answer the following question: what is the value of autonomy in biomedical research, and more particularly in the context of biobanks? To answer this question, we will study the concept of autonomy in two areas of applied ethics: research ethics and public health ethics. Since the second half of the 20th century, respect for individual autonomy has been a programmatic principle of research ethics. However, many authors consider this conceptualization to be too individualistic to respond to the challenges that characterize health research today. In public health ethics, on the contrary, individual autonomy takes a less preponderant role and acknowledges some socio-political dimensions of autonomy that have been neglected by the field of research ethics. These dimensions highlight the role of institutions in promoting autonomy as well as the need for individuals to have the opportunity to participate in the development of health policies in order to achieve their autonomy. Finally, the case study of biobanks will provide an opportunity to apply these different conceptualizations of autonomy to a rapidly expanding field of research located at the crossroads between research ethics and public health.

Inledningen förklarar förändring av livsmedelsproduktionen och att industrin kan ha potentiella etiska dilemman för jämlikheten. Att den industriella djurproduktionen kan ha förstärkt spridningen av Covid19 och att industrier ofta placeras i områden med låg socioekonomi. Bakgrunden förklarar att ett jämlikt samhälle har fördelar för alla. Samt hur Folkhälsomyndigheten arbetar med jämlikhet genom målet om en god och jämlik hälsa. Därefter beskrivs tidigare forskning, begrepp och teorier. Syftet med studien var att analyseraom den industriella djurproduktionen var etiskt försvarbar. Detta utfördes genom att analysera om industrin har potentiella risker för jämlikheten. Metoden var en kvalitativ innehållsanalys. Urval var tio rapporter från privata- och statliga organisationer. Analysen i denna studie utgick från begreppet jämlikhet som kopplades till målet om en god och jämlik hälsa och de politiska folkhälsomålområdena. Vidare användes två normativa teorier, konsekvensetik och deontologisk/plikt- och rättighetsetik. Resultatet visar på att den industriella djurproduktionen kan ha potentiella risker. Riskerna framkom inom kategorierna; arbete, miljö och sjukdom. De potentiella riskerna sågs inom majoriteten av folkhälsopolitiska målområdena. Dessa risker kan påverka alla människor, dock visar resultatet att de som redan var utsatta var i högre risk för ohälsa och att dessa risker kan vara orättvisa, onödiga och undvikbara. Slutsatsen är att industrin kan ha potentiella direkta- och indirekta jämlikhetsbarriärer för en god och jämlik hälsa inom flera av de folkhälsopolitiska målområdena. De potentiella riskerna som framkommit i denna studie, analyserat från valda teorier, indikerar att IDP inte är etiskt försvarbar. / The introduction explains the change in food production and potential ethical dilemmas for equality. That the industrial animal production may have increased the spread of Covid19 and that industries are located in areas with low socioeconomic status. The background explains that equal society has benefits for everyone. And how the Public Health Agency works with equality through the goal of good and equal health. It then describes previous research, as well as concepts and theories. The purpose of the study was to analyse whether the industrial animal production was ethically defensible. The method was a qualitative content analysis. Selections were ten reports from private and government organizations. The analysis in this study was based on the concept of equality, which was linked to the goal of good and equal health and the political public health goal areas. Furthermore, two normative theories were used, consequential ethics and deontological/duty and rights ethics. The result shows that industrial animal production can have potential risks within the categories: work, environment, and illness. These risks can affect all people, the results show that those who were already exposed were at higher risk of ill health and that these risks can be unfair, unnecessary, and avoidable. The conclusion is that the industry can have potential direct and indirect equality barriers for good and equal health within several of the public health policy target areas. The potential risks identified in this study, analysed from selected theories, indicate that the industry is not ethically defensible.

Au Québec, les personnes ayant une ascendance géographique des régions du Saguenay-Lac- Saint-Jean, de Charlevoix et de la Haute-Côte-Nord ont une prévalence plus élevée que le reste de la population québécoise d’être porteurs de certaines maladies héréditaires récessives. Depuis 2018, une offre de tests de porteurs en ligne est proposée par le Ministère de la Santé et des Services Sociaux du Québec pour quatre maladies autosomiques récessives : l’acidose lactique congénitale, la tyrosinémie héréditaire de type 1, la neuropathie sensitivomotrice avec ou sans agénésie du corps calleux et l’ataxie récessive spastique de Charlevoix-Saguenay. Ce même dépistage peut être offert en contexte clinique, chez des adultes éligibles lors de consultations en lien avec un désir de grossesse ou une grossesse en cours. Les objectifs de ce projet de recherche sont (1) de décrire l’expérience des patients ayant eu accès au dépistage de porteurs en contexte clinique et (2) d’identifier, analyser et comparer les enjeux éthiques soulevés par un dépistage de porteurs dans le cadre d’un programme structuré versus un dépistage de porteurs en contexte clinique. Pour ce faire, une série de questionnaires destinée aux patients auxquels le dépistage a été offert lors d’un rendez-vous en clinique a été mise en place et une analyse éthique à l’aide d’un cadre éthique de santé publique a été réalisée. À la lumière de ce projet, l’autonomie décisionnelle du patient est mise de l’avant. Des pistes de réflexion ainsi que des recommandations ont été développées afin de répondre au mieux aux besoins des personnes qui considèrent avoir recours à des tests de porteurs. / In Quebec, people with geographical ancestry from the Saguenay-Lac-Saint-Jean, Charlevoix and Haute-Côte-Nord regions have a higher prevalence than the rest of the Quebec population of being carriers of specific recessive hereditary diseases. Since 2018, online carrier testing has been offered by the Ministère de la Santé et des Services Sociaux du Québec for four autosomal recessive diseases: congenital lactic acidosis, hereditary tyrosinemia type 1, sensitivomotor neuropathy with or without agenesis of the corpus callosum and Charlevoix-Saguenay recessive spastic ataxia. This same screening can be offered in a clinical setting, to eligible adults during consultations related to a pregnancy desire or a pregnancy in progress. The objectives of this research project are (1) to describe the experience of patients who have had access to carrier screening in a clinical setting and (2) to identify, analyze and compare the ethical issues raised by carrier screening in a structured program versus carrier screening in a clinical setting. To this end, a series of questionnaires was administered to patients who were offered screening during a clinic appointment, and an ethical analysis was carried out using a public health ethics framework. In the light of this project, the patient's decision-making autonomy is emphasized. A number of ideas and recommendations have been developed to best meet the needs of people considering carrier testing.