Bioethics in Health Policy Development: A Primer for Decision-Makers

ArticleLe plus souvent reconnu comme un associé de la médecine et des organismes de règlementation de la recherche biomédicale, le domaine de la bioéthique a récemment élargi sa compétence académique pour inclure un rôle croissant dans les processus de décision dans des contextes de politiques de santé. Grâce à cette expansion, les professionnels de la santé et les administrateurs sont de plus en plus informés de l'utilité et de la nécessité d'intégrer les considérations éthiques dans l'élaboration des politiques. Cependant, beaucoup de ces professionnels ont du mal à définir le lien entre l'éthique et les processus décisionnels ainsi que le rôle (s’ils en ont un) des bioéthiciens dans la structuration des politiques de santé. Écrit pour un public multidisciplinaire, cet article vise à aider et à clarifier ces concepts en fournissant un aperçu aisément tangible de l'analyse éthique dans les politiques de santé. La discussion va d’abord définir les questions éthiques communes en matière de politiques de santé. Elle va ensuite clarifier la manière dont les cadres, structurés à partir de principes éthiques, peuvent guider l'élaboration de politiques et aider les professionnels de la santé à développer des compétences de prise de décision. La discussion se conclut en décrivant le rôle du bioéthicien dans ce processus comme étant un professionnel permettant la traduction des connaissances entre l'éthique appliquée et les contextes de prise de décisions en matière de santé. À la suite de la lecture de cet article, on espère que les professionnels de la santé, indépendamment de leur origine professionnelle, acquerront une meilleure compréhension des questions éthiques dans l'élaboration des politiques de santé et, ainsi, les bioéthiciens cesseront d'être considérés comme d’étranges associés parmi les décideurs.Most commonly recognised as a close bedfellow of medicine and regulators of biomedical research, the field of bioethics has recently expanded its academic jurisdiction to include a growing role in decision-making processes within health policy contexts. From this expansion, health professionals and administrators are increasingly knowledgeable of the utility and necessity to incorporate ethical considerations in policy development. However, many of these professionals have difficulty defining the link between ethics and decision-making processes, and what role – if any – bioethicists play in the structuring of health policies. Written for a multidisciplinary audience, this article aims to help clarify these concepts by providing a readily tangible overview of ethical analysis in health policy. The discussion will define common ethical issues in health policy and how frameworks structured upon principles of ethics can guide policy development and aid the decision-making capacities of health professionals. The discussion concludes by describing the role of the bioethicist in this process as a professional that serves to translate knowledge between applied ethics and decision-making contexts in health. Upon reading this article, it is expected that health professionals, regardless of occupational background, will gain a better understanding of ethical issues in health policy development, and as such, the bioethicist will hopefully cease to be viewed as an odd bedfellow amongst policy-makers

For the Creative Spirits Out There: BioéthiqueOnline Inaugurates a Publication Venue for Creative and Artistic Works in Bioethics / Pour les esprits créatifs émergents: BioéthiqueOnline inaugure une section spéciale pour les travaux créatifs et artistiques en matière de bioéthique

Éditoral / Editoria

Principles for Incorporating Farmers in the Ethical Assessment of Genetically Modified Crops

[À l'origine dans / Was originally part of : ESPUM - Dép. médecine sociale et préventive - Travaux et publications]A current advance within the agricultural industry is the use of genetic engineering to produce novel crops for food production. This technology raises questions about how societies should position themselves with respect to genetically modified (GM) crop development and implementation; namely, how should the potentials and risks of this technology be evaluated? We argue that current methods to evaluate the risks and benefits of GM crops are inadequate and not conducive to the strategic development of this technology, where a way to ameliorate technology assessments for GM crops is to include farmers in the research process of evaluating these crops prior to their commercialization. However, particularities concerning the ethical status of such research require special consideration and vigilance. For example, in such technology assessment initiatives, farmers would occupy both the roles of research participant and research investigator. Other particularities surface due to factors related to the nature of GM crops. These particularities are examined with reference to concepts drawn from the field of research ethics, namely informed consent, compensatory decisions, and issues of participant inclusion/exclusion.Fonds de la recherche en santé du Québec (FRSQ); APOGEE-Net Canada, Université de Montréal; Social Sciences and Humanities Research Council of Canada (SSHRC

Ethics in Health Policy for Allergy : A Practical Approach for Decision-Makers

Comme à l’approche d’un tsunami, l’incidence grandissante des allergies affecte maintenant plus de 30% de la population des pays développés. Étant la cause de nombreuses morbidités et un risque significatif de mortalité, les allergies nécessitent des dépenses exorbitantes au système de santé et constituent une des plus importantes sources d’invalidité. Cette thèse a pour but de contribuer à faciliter la prise de décision éclairée dans le développement de politiques en santé en lien avec cette maladie immunitaire chronique en utilisant des principes d’éthique comme outils pour guider le développement de politiques en santé. Le premier chapitre démontre le présent déficit d’analyses des enjeux éthiques en allergologie et démontre de quelle façon les réflexions en éthique peuvent guider le développement de politiques et l’élaboration de stratégies appliquées aux allergies. Les chapitres qui suivront présentent des applications spécifiques des principes d’éthiques ciblant des contextes précis comme des méthodes qui fournissent des outils de réflexion et des cadres théoriques qui peuvent être appliqués par les décideurs pour guider des interventions en santé concernant les allergies et les conditions de co-morbidité reliées. Le second chapitre présente un cadre théorique pour l’évaluation et la priorisation d’interventions en santé publique par la diminution des allergènes présents dans l’environnement basées sur des théories de justice sociale. Les critères entourant les politiques d’évaluation se concentrent sur les enjeux éthiques référant aux populations vulnérables, sur une distribution plus égale des bénéfices pour la santé, et sur le devoir d’éviter la stigmatisation. Le troisième chapitre offre aux administrateurs et au personnel infirmier du réseau scolaire un cadre décisionnel pour guider le développement de politiques efficaces et éthiquement justifiables concernant les allergies alimentaires pour les écoles. Dans ce contexte, les principes de base d’éthique en santé publique et en bioéthique - par exemple, l’empowerment des populations vulnérables dans la prise en charge de leur santé et la protection de la confidentialité du dossier médical - servent d’outils pour évaluer les politiques. Le dernier chapitre emploie les principes de base de recherche en éthique comme méthode pour développer un argumentaire en faveur de la réforme des réglementations entourant la production de médicaments immunothérapeutiques. La nécessité éthique d’éviter les risques de méfait à l’endroit du sujet humain dans la recherche permettra de servir de guide pour structurer de futures politiques en santé publique en égard à la production d’immunothérapeutiques à l’échelle mondiale.Like a slowly rising wave approaching shore, the growing incidence of allergic disease now afflicts over 30% of the population in the developed world. Being the cause of severe morbidities and a significant risk of mortality, allergy requires huge resource expenditures in health care and is a leading cause of disability. This thesis aims to contribute to ameliorating decision-making capacities in health policy development for this chronic immune disease by employing principles of ethics as tools to help structure policy initiatives. The first chapter will demonstrate the current deficiency of ethical analysis in allergology and show how ethical assessments could have utility in guiding policy developments and treatment strategies for allergy. The subsequent chapters present a focused application of ethical principles within specific contexts as a means to provide reflective tools and theoretical frameworks that could be used by decision-makers to guide health interventions for allergy and co-morbid conditions. The second chapter presents a conceptual framework for evaluating and prioritizing public health interventions in minimizing environmental allergens based on theories of social justice. Policy assessment criteria centre on justice issues pertaining to vulnerable populations, the fair distribution of health benefits, and the imperative to avoid stigma. The third chapter provides school administrators with a framework to guide the development of efficacious and ethically sound food allergy policies for schools. In this context, core principles in public health ethics and bioethics – examples being the empowerment of vulnerable populations in controlling their health and protecting confidentiality of medical information – serve as tools for policy assessments. The final chapter employs core principles from research ethics as a method to argue for regulatory reforms in the production of allergenimmunotherapeutic drugs. The ethical imperative to avoid risks of harm to human subjects in research will serve as a guide to structure future health policies in the global production of immuno-therapeutics

Bob and Jane go to Argentina: The Ethics of Cross-Border Care

Étude de cas / Case studyCette étude de cas présente l'histoire d’une couple Nord- Américain typique à la recherche de traitements de fertilité sur Internet. Cette recherche les conduit sur des sites de cliniques dans d'autres pays, ce qui les amène à penser à voyager à l'étranger pour des services médicaux - également connu comme le tourisme médical.This case study presents the story of a typical North American couple searching for fertility treatments on the Internet. This search leads to sites of clinics in other countries, which gets them thinking about traveling abroad for medical services – also known as medical tourism

Reproductive Tourism in Argentina: Clinic Accreditation and its Implications for Consumers, Health Professionals and Policy Makers

[À l'origine dans / Was originally part of : ESPUM - Dép. médecine sociale et préventive - Travaux et publications]A subcategory of medical tourism, reproductive tourism has been the subject of much public and policy debate in recent years. Specific concerns include: the exploitation of individuals and communities, access to needed health care services, fair allocation of limited resources, and the quality and safety of services provided by private clinics. To date, the focus of attention has been on the thriving medical and reproductive tourism sectors in Asia and Eastern Europe; there has been much less consideration given to more recent ‘players’ in Latin America, notably fertility clinics in Chile, Brazil, Mexico and Argentina. In this paper, we examine the context-specific ethical and policy implications of private Argentinean fertility clinics that market reproductive services via the internet. Whether or not one agrees that reproductive services should be made available as consumer goods, the fact is that they are provided as such by private clinics around the world. We argue that basic national regulatory mechanisms are required in countries such as Argentina that are marketing fertility services to local and international publics. Specifically, regular oversight of all fertility clinics is essential to ensure that consumer information is accurate and that marketed services are safe and effective. It is in the best interests of consumers, health professionals and policy makers that the reproductive tourism industry adopts safe and responsible medical practices.Elise Smith was supported by a COPSE studentship from the Faculty of Medicine (Université de Montréal), Carolina Martin by a Bioethics scholarship from the Faculty of Graduate Studies (Université de Montréal), and Jason Behrmann by scholarships from the Fonds de la recherche en santé du Québec (FRSQ), the Université de Montréal and the APOGEE-Net Network of Canada. This project, part of larger program of research, was supported by grants to Bryn Williams-Jones from the Faculty of Medicine of the Université de Montréal (start-up grant, 2006), the Social Sciences and Humanities Research Council of Canada (SSHRC Institutional pilot grant, 2007), and the International Institute of Research in EthicsandBiomedicine (IIREB travel award to visit Argentina, 2008)

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Éditoral / Editoria

Looking ahead at the potential benefits of biotechnology-derived allergen therapeutics

While biotechnology-derived allergen therapeutics show promise in improving the safety of immunotherapy, they may prove to have additional benefits in comparison to conventional allergenic extracts that deserve commentary. These issues range from product stability and compatibility to medical practice issues, which will be the focus of this article

The anti-vaccination movement and resistance to allergen-immunotherapy: a guide for clinical allergists

Despite over a century of clinical use and a well-documented record of efficacy and safety, a growing minority in society questions the validity of vaccination and fear that this common public health intervention is the root-cause of severe health problems. This article questions whether growing public anti-vaccine sentiments might have the potential to spill-over into other therapies distinct from vaccination, namely allergen-immunotherapy. Allergen-immunotherapy shares certain medical vernacular with vaccination (e.g., allergy shots, allergy vaccines), and thus may become "guilty by association" due to these similarities. Indeed, this article demonstrates that anti-vaccine websites have begun unduly discrediting this allergy treatment regimen. Following an explanation of the anti-vaccine movement, the article aims to provide guidance on how clinicians can respond to patient fears towards allergen-immunotherapy in the clinical setting. This guide focuses on the provision of reliable information to patients in order to dispel misconceived associations between vaccination and allergen-immunotherapy, and the discussion of the risks and benefits of both therapies in order to assist patients in making autonomous decisions about their choice of allergy treatment