{"title":"Data Medicine: ‘Broad’ or ‘Dynamic’ Consent?","authors":"Henri-Corto Stoeklé, E. Hulier-Ammar, C. Hervé","doi":"10.1093/phe/phac014","DOIUrl":"https://doi.org/10.1093/phe/phac014","url":null,"abstract":"\u0000 The General Data Protection Regulation imposes, at European level, a need to seek express or explicit consent for the processing of health data. In the framework of biomedical research, some favor the use of express ‘broad’ consent, whereas other maintain, or wish to maintain the use of presumed or implicit consent, often referred to as ‘non-opposition’ in conditions in which such consent is still authorized. In our view, broad consent and presumed consent are likely to prove to be easy solutions in the short term but much less relevant in the long term, for both hospital and patients, if the bioethical objective remains the improvement of patient quality of life and/or survival, regardless of the disease considered. Dynamic consent could be the best way to achieve this objective because only this type of consent could improve hospital transparency and increase patient confidence by allaying certain fears.","PeriodicalId":49136,"journal":{"name":"Public Health Ethics","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2022-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42990108","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Democratic Ethical Consumption and Social Justice","authors":"A. Albertsen","doi":"10.1093/phe/phac011","DOIUrl":"https://doi.org/10.1093/phe/phac011","url":null,"abstract":"\u0000 Hassoun argues that the poor in the world have a right to health and that the Global Health Impact Index provides consumers in well-off countries with the opportunity to ensure that more people have access to essential medicines. Because of this, these consumers would be ethically obliged to purchase Global Health Impact Index-labeled products in the face of existing global inequalities. In presenting her argument, Hassoun rejects the so-called democratic account of ethical consumption in favor of the positive change account. Two versions of the democratic change account are relevant. One underscores the importance of democratic procedures and institutions, while the other stresses our fundamental moral equality. While at least one prominent institutionalist account has problems, revised versions would be less vulnerable to Hassoun’s counterexamples. Furthermore, institutionalist accounts come with the epistemological gains from democratic procedures and deliberations, which may be especially important under uncertainty. Finally, and perhaps more challenging for the Global Health Impact index project, this measure may place the burden unfairly on those who need to buy medicines. This is a pivotal insight from the non-institutionalist version of the democratic account of ethical consumption.","PeriodicalId":49136,"journal":{"name":"Public Health Ethics","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2022-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49489902","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Chisom N Iwundu, M. Homan, A. Moore, Pierce Randall, S. Daundasekara, D. Hernandez
{"title":"Firearm Violence in the United States: An Issue of the Highest Moral Order","authors":"Chisom N Iwundu, M. Homan, A. Moore, Pierce Randall, S. Daundasekara, D. Hernandez","doi":"10.1093/phe/phac017","DOIUrl":"https://doi.org/10.1093/phe/phac017","url":null,"abstract":"\u0000 Firearm violence in the United States produces over 36,000 deaths and 74,000 sustained firearm-related injuries yearly. The paper describes the burden of firearm violence with emphasis on the disproportionate burden on children, racial/ethnic minorities, women and the healthcare system. Second, this paper identifies factors that could mitigate the burden of firearm violence by applying a blend of key ethical theories to support population level interventions and recommendations that may restrict individual rights. Such recommendations can further support targeted research to inform and implement interventions, policies and laws related to firearm access and use, in order to significantly reduce the burden of firearm violence on individuals, health care systems, vulnerable populations and society-at-large. By incorporating a blended public health ethics to address firearm violence, we propose a balance between societal obligations and individual rights and privileges.","PeriodicalId":49136,"journal":{"name":"Public Health Ethics","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2022-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48366042","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Public Health EthicsPub Date : 2022-09-02eCollection Date: 2022-11-01DOI: 10.1093/phe/phac016
Leon W S Rossmaier
{"title":"Commercial mHealth Apps and Unjust Value Trade-offs: A Public Health Perspective.","authors":"Leon W S Rossmaier","doi":"10.1093/phe/phac016","DOIUrl":"10.1093/phe/phac016","url":null,"abstract":"<p><p>Mobile health (mHealth) apps for self-monitoring increasingly gain relevance for public health. As a mobile technology, they promote individual participation in health monitoring with the aim of disease prevention and the mitigation of health risks. In this paper, I argue that users of mHealth apps must engage in value trade-offs concerning their fundamental dimensions of well-being when using mobile health apps for the self-monitoring of health parameters. I particularly focus on trade-offs regarding the user's self-determination as well as their capacity to form personal attachments. Depending on the user's level of advantage or disadvantage, value trade-offs can pose a threat to the users' sufficient fulfillment of the dimensions of well-being. As such, value trade-offs can entrench existing structural injustices and prevent disadvantaged users to benefit from this technology. I argue that value trade-offs are, to some, a type of injustice that can drive disadvantaged users away from a sufficiency threshold of well-being, risk users to fall below the threshold, or have an accumulative effect on different dimensions of the user's well-being.</p>","PeriodicalId":49136,"journal":{"name":"Public Health Ethics","volume":"15 3","pages":"277-288"},"PeriodicalIF":1.4,"publicationDate":"2022-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9883713/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10696627","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"The Metric Used in the Global Health Impact Project: Implicit Values and Unanswered Questions","authors":"Y. Asada","doi":"10.1093/phe/phac015","DOIUrl":"https://doi.org/10.1093/phe/phac015","url":null,"abstract":"\u0000 The core aims of the Global Health Impact Project include incentivizing pharmaceutical companies for socially conscious production and promoting socially conscious consumption among consumers. Its backbone is a metric that computes the amount of illness burden alleviated by a pharmaceutical drug. This essay aims to assess the connection between values and numbers in the Global Health Impact Project. Specifically, I concentrate on two issues, the anonymity of illness burden and the distribution of health benefits. The former issue asks whether we should treat the illness burden of every person the same. The latter issue asks among whom health benefits should be fairly distributed. Examination of these issues begs for clarification of some of the key concepts of the Global Health Impact Project, such as the definition of essential medicines and the significance of national borders. Although this essay focuses on the two particular metric issues in the Global Health Impact Project, its core argument is applicable to other metrics for ethically motivated initiatives—to construct a metric for an ethically motivated initiative, it is not only important to articulate underlying concepts and values, but it is also important to operationalize them, so they are consistently reflected in the metric.","PeriodicalId":49136,"journal":{"name":"Public Health Ethics","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2022-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45661962","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"DALYs and the Minimally Good Life","authors":"Tim Campbell","doi":"10.1093/phe/phac012","DOIUrl":"https://doi.org/10.1093/phe/phac012","url":null,"abstract":"\u0000 Nicole Hassoun’s book Global Health Impact: Extending Access to Essential Medicines has three parts. Part 1 is about the right to health, Part 2 offers a concrete proposal for how to promote the ability of people in the developing world to live minimally good lives and Part 3 is concerned with consumer responsibility as it relates to global health. I argue that there is a philosophical tension between the respective projects of Parts 1 and 2. The project of Part 1 reflects a sufficientarian ideal, namely ensuring that each person in our global community has the ability to live a minimally good life. But, the concrete proposal offered in Part 2 reflects a different ideal, namely maximizing global health benefit. While these two ideals may often converge on a set of feasible health outcomes that we should aim to bring about, they can also diverge. The extent to which they diverge depends on our specification of the minimally good life. It is therefore crucial that we have a criterion for distinguishing lives that are at least minimally good from those that are not. Unfortunately, Hassoun’s proposed criterion is problematic in that no life satisfies it.","PeriodicalId":49136,"journal":{"name":"Public Health Ethics","volume":"1 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2022-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41655673","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Enhancing Global Health Impact—Beyond the Basic Minimum, Metrics and Ethical Consumption","authors":"Nicole Hassoun","doi":"10.1093/phe/phac013","DOIUrl":"https://doi.org/10.1093/phe/phac013","url":null,"abstract":"\u0000 How should we measure medicines’ global health impact to set targets, monitor performance and improve health around the world? Can such a metric provide a philosophically well-grounded basis for an ethical consumption campaign that will create incentives for pharmaceutical companies and other agents to expand (equitable) access to essential medicines? And if such metrics exist, how should we think about our individual obligations to support ethical consumption campaigns on this basis? This paper reflects on these questions in light of Tim Campbell’s, Yukiko Asada’s, and Andreas Albertsen’s worries about the answers I provide in Global Health Impact: Extending Access on Essential Medicines. I explain how reflecting on treatments consequences for individuals’ ability to live minimally well supports the creation of the Global Health Impact (GHI) index (https://global-health-impact.org/). I also consider how the index might be modified to better support efforts to promote everyone’s human rights. Finally, I argue that individuals should often promote positive change through GHI and other ethical consumption campaigns.","PeriodicalId":49136,"journal":{"name":"Public Health Ethics","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2022-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48244348","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Better Mechanisms Are Needed to Oversee HREC Reviews.","authors":"Lisa Eckstein, Rebekah McWhirter, Cameron Stewart","doi":"10.1093/phe/phac010","DOIUrl":"https://doi.org/10.1093/phe/phac010","url":null,"abstract":"<p><p>Hawe <i>et al</i>. raise concerns about Human Research Ethics Committees (HRECs) taking a risk-averse and litigation-sensitive approach to ethical review of research proposals. HRECs are tasked with reviewing proposals for compliance with the <i>National Statement on Ethical Conduct in Human Research</i> for the purpose of promoting the welfare of participants. While these guidelines intentionally include a significant degree of discretion in HREC decision making, there is also evidence that HRECs sometimes request changes that go beyond the guidance provided by the <i>National Statement</i>. When HRECs request changes outside their remit, inconsistencies between individual HRECs become more common, contributing to delays in ethical review and reducing the quality of HREC decision making. Improvements to the HREC regulatory system are needed to promote transparency and accountability.</p>","PeriodicalId":49136,"journal":{"name":"Public Health Ethics","volume":"15 2","pages":"200-203"},"PeriodicalIF":2.1,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9719317/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10373172","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Yukiko Asada, Marion Brown, Mary McNally, Andrea Murphy, Robin Urquhart, Grace Warner
{"title":"Personal Responsibility for Health: Exploring Together with Lay Persons.","authors":"Yukiko Asada, Marion Brown, Mary McNally, Andrea Murphy, Robin Urquhart, Grace Warner","doi":"10.1093/phe/phac009","DOIUrl":"https://doi.org/10.1093/phe/phac009","url":null,"abstract":"<p><p>Emerging parallel to long-standing, academic and policy inquiries on personal responsibility for health is the empirical assessment of lay persons' views. Yet, previous studies rarely explored personal responsibility for health among lay persons as dynamic societal values. We sought to explore lay persons' views on personal responsibility for health using the Fairness Dialogues, a method for lay persons to deliberate equity issues in health and health care through a small group dialogue using a hypothetical scenario. We conducted two 2-h Fairness Dialogues sessions (<i>n</i> = 15 in total) in Nova Scotia, Canada. We analyzed data using thematic analysis. Our analysis showed that personal choice played an important role in participants' thinking about health. Underlying the concept of personal choice was considerations of freedom and societal debt. In participants' minds, personal and social responsibilities co-existed and they were unwilling to determine health care priority based on personal responsibility. The Fairness Dialogues is a promising deliberative method to explore lay persons' views as dynamic values to be developed through group dialogues as opposed to static, already-formed values waiting to be elicited.</p>","PeriodicalId":49136,"journal":{"name":"Public Health Ethics","volume":"15 2","pages":"160-174"},"PeriodicalIF":2.1,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9719321/pdf/phac009.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9867715","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
A R Howarth, C S Estcourt, R E Ashcroft, J A Cassell
{"title":"Building an Opt-Out Model for Service-Level Consent in the Context of New Data Regulations.","authors":"A R Howarth, C S Estcourt, R E Ashcroft, J A Cassell","doi":"10.1093/phe/phab030","DOIUrl":"https://doi.org/10.1093/phe/phab030","url":null,"abstract":"<p><p>The General Data Protection Regulation (GDPR) was introduced in 2018 to harmonize data privacy and security laws across the European Union (EU). It applies to any organization collecting personal data in the EU. To date, service-level consent has been used as a proportionate approach for clinical trials, which implement low-risk, routine, service-wide interventions for which individual consent is considered inappropriate. In the context of public health research, GDPR now requires that individuals have the option to choose whether their data may be used for research, which presents a challenge when consent has been given by the clinical service and not by individual service users. We report here on development of a pragmatic opt-out solution to this consent paradox in the context of a partner notification intervention trial in sexual health clinics in the UK. Our approach supports the individual's right to withhold their data from trial analysis while routinely offering the same care to all patients.</p>","PeriodicalId":49136,"journal":{"name":"Public Health Ethics","volume":"15 2","pages":"175-180"},"PeriodicalIF":2.1,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9719338/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10373174","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}