Pub Date : 2020-12-03eCollection Date: 2021-04-01DOI: 10.1093/phe/phaa033
Mirko Ancillotti, Stefan Eriksson, Tove Godskesen, Dan I Andersson, Jessica Nihlén Fahlquist
Due to the alarming rise of antibiotic resistance, medically unwarranted use of antibiotics has assumed new moral significance. In this paper, a thematic content analysis of focus group discussions was conducted to explore lay people's views on the moral challenges posed by antibiotic resistance. The most important finding is that lay people are morally sensitive to the problems entailed by antibiotic resistance. Participants saw the decreasing availability of effective antibiotics as a problem of justice. This involves individual as well as collective moral responsibility. Yet, holding agents responsible for their use of antibiotics involves varying degrees of demandingness. In our discussion, these findings are related to the contemporary ethical debate on antibiotic resistance and two proposals for the preservation of antibiotic effectiveness are compared to and evaluated against participants' views.
{"title":"An Effort Worth Making: A Qualitative Study of How Swedes Respond to Antibiotic Resistance.","authors":"Mirko Ancillotti, Stefan Eriksson, Tove Godskesen, Dan I Andersson, Jessica Nihlén Fahlquist","doi":"10.1093/phe/phaa033","DOIUrl":"10.1093/phe/phaa033","url":null,"abstract":"<p><p>Due to the alarming rise of antibiotic resistance, medically unwarranted use of antibiotics has assumed new moral significance. In this paper, a thematic content analysis of focus group discussions was conducted to explore lay people's views on the moral challenges posed by antibiotic resistance. The most important finding is that lay people are morally sensitive to the problems entailed by antibiotic resistance. Participants saw the decreasing availability of effective antibiotics as a problem of justice. This involves individual as well as collective moral responsibility. Yet, holding agents responsible for their use of antibiotics involves varying degrees of demandingness. In our discussion, these findings are related to the contemporary ethical debate on antibiotic resistance and two proposals for the preservation of antibiotic effectiveness are compared to and evaluated against participants' views.</p>","PeriodicalId":49136,"journal":{"name":"Public Health Ethics","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2020-12-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8254642/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39162825","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}
Pub Date : 2020-11-27eCollection Date: 2021-04-01DOI: 10.1093/phe/phaa035
Sara Belfrage, Niels Lynöe, Gert Helgesson
We have investigated attitudes towards the use of health data among the Swedish population by analyzing data from a survey answered by 1645 persons. Health data are potentially useful for a variety of purposes. Yet information about health remains sensitive. A balance therefore has to be struck between these opposing considerations in a number of contexts. The attitudes among those whose data is concerned will influence the perceived legitimacy of policies regulating health data use. We aimed to investigate what views are held by the general public, and what aspects matter for the willingness to let one's data be used not only for one's own care but also for other purposes. We found that while there is a broad willingness to let one's data be used, the possibility to influence that use is considered important. The study also indicated that when respondents are required to balance different interests, priority is typically given to compulsory schemes ensuring that data are available where needed, rather than voluntary participation and data protection. The policy implications to be drawn from this are not self-evident, however, since the fact that a majority has a certain attitude does not by itself determine the most adequate policy.
{"title":"Willingness to Share yet Maintain Influence: A Cross-Sectional Study on Attitudes in Sweden to the Use of Electronic Health Data.","authors":"Sara Belfrage, Niels Lynöe, Gert Helgesson","doi":"10.1093/phe/phaa035","DOIUrl":"10.1093/phe/phaa035","url":null,"abstract":"<p><p>We have investigated attitudes towards the use of health data among the Swedish population by analyzing data from a survey answered by 1645 persons. Health data are potentially useful for a variety of purposes. Yet information about health remains sensitive. A balance therefore has to be struck between these opposing considerations in a number of contexts. The attitudes among those whose data is concerned will influence the perceived legitimacy of policies regulating health data use. We aimed to investigate what views are held by the general public, and what aspects matter for the willingness to let one's data be used not only for one's own care but also for other purposes. We found that while there is a broad willingness to let one's data be used, the possibility to influence that use is considered important. The study also indicated that when respondents are required to balance different interests, priority is typically given to compulsory schemes ensuring that data are available where needed, rather than voluntary participation and data protection. The policy implications to be drawn from this are not self-evident, however, since the fact that a majority has a certain attitude does not by itself determine the most adequate policy.</p>","PeriodicalId":49136,"journal":{"name":"Public Health Ethics","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2020-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8254641/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39162826","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}
Hélène Nobile, P. Borry, Jennifer Moldenhauer, M. Bergmann
As a cornerstone of public health, epidemiology has lately undergone substantial changes enabled by, among other factors, the use of biobank infrastructures. In biobank-related research, the return of results to participants constitutes an important and complex ethical question. In this study, we qualitatively investigated how individuals perceive the results returned following their participation in cohort studies with biobanks. In our semi-structured interviews with 31 participants of two such German studies, we observed that some participants overestimate the nature of the personal information they will receive from the study. Although this misestimation does not seem to jeopardize the validity of the consent provided at recruitment, it may still represent a threat for participants’ trust in research and thus their long-term commitment, crucial for such studies. We argue that such misestimation may have ethical consequences on the principles guiding the reflection on the return of results in biobank research, i.e. autonomy, beneficence, non-maleficence and reciprocity. We suggest that shifting from the idea of directly benefiting participants through the return of research results could help focusing on benefiting society as a whole, thereby increasing research trustworthiness of population-based studies using biobanks.
{"title":"Return of Results in Population Studies: How Do Participants Perceive Them?","authors":"Hélène Nobile, P. Borry, Jennifer Moldenhauer, M. Bergmann","doi":"10.1093/phe/phaa034","DOIUrl":"https://doi.org/10.1093/phe/phaa034","url":null,"abstract":"\u0000 As a cornerstone of public health, epidemiology has lately undergone substantial changes enabled by, among other factors, the use of biobank infrastructures. In biobank-related research, the return of results to participants constitutes an important and complex ethical question. In this study, we qualitatively investigated how individuals perceive the results returned following their participation in cohort studies with biobanks. In our semi-structured interviews with 31 participants of two such German studies, we observed that some participants overestimate the nature of the personal information they will receive from the study. Although this misestimation does not seem to jeopardize the validity of the consent provided at recruitment, it may still represent a threat for participants’ trust in research and thus their long-term commitment, crucial for such studies. We argue that such misestimation may have ethical consequences on the principles guiding the reflection on the return of results in biobank research, i.e. autonomy, beneficence, non-maleficence and reciprocity. We suggest that shifting from the idea of directly benefiting participants through the return of research results could help focusing on benefiting society as a whole, thereby increasing research trustworthiness of population-based studies using biobanks.","PeriodicalId":49136,"journal":{"name":"Public Health Ethics","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2020-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1093/phe/phaa034","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44976571","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}
Pub Date : 2020-11-03eCollection Date: 2020-07-01DOI: 10.1093/phe/phaa028
Nir Eyal
Are some risks to study participants too much, no matter how valuable the study is for society? This article answers in the negative.
不管这项研究对社会有多大价值,对研究参与者来说,是否有些风险太大了?这篇文章的答案是否定的。
{"title":"Is There an Ethical Upper Limit on Risks to Study Participants?","authors":"Nir Eyal","doi":"10.1093/phe/phaa028","DOIUrl":"https://doi.org/10.1093/phe/phaa028","url":null,"abstract":"<p><p>Are some risks to study participants too much, no matter how valuable the study is for society? This article answers in the negative.</p>","PeriodicalId":49136,"journal":{"name":"Public Health Ethics","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2020-11-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1093/phe/phaa028","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38355918","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}
Pub Date : 2020-10-29eCollection Date: 2020-11-01DOI: 10.1093/phe/phaa030
Carl Tollef Solberg, Preben Sørheim, Karl Erik Müller, Espen Gamlund, Ole Frithjof Norheim, Mathias Barra
In recent years, it has become commonplace among the Global Burden of Disease (GBD) study authors to regard the disability-adjusted life year (DALY) primarily as a descriptive health metric. During the first phase of the GBD (1990-1996), it was widely acknowledged that the DALY had built-in evaluative assumptions. However, from the publication of the 2010 GBD and onwards, two central evaluative practices-time discounting and age-weighting-have been omitted from the DALY model. After this substantial revision, the emerging view now appears to be that the DALY is primarily a descriptive measure. Our aim in this article is to argue that the DALY, despite changes, remains largely evaluative. Our analysis focuses on the understanding of the DALY by comparing the DALY as a measure of disease burden in the two most significant phases of GBD publications, from their beginning (1990-1996) to the most recent releases (2010-2017). We identify numerous assumptions underlying the DALY and group them as descriptive or evaluative. We conclude that while the DALY model arguably has become more descriptive, it remains, by necessity, largely evaluative.
{"title":"The Devils in the DALY: Prevailing Evaluative Assumptions.","authors":"Carl Tollef Solberg, Preben Sørheim, Karl Erik Müller, Espen Gamlund, Ole Frithjof Norheim, Mathias Barra","doi":"10.1093/phe/phaa030","DOIUrl":"https://doi.org/10.1093/phe/phaa030","url":null,"abstract":"<p><p>In recent years, it has become commonplace among the Global Burden of Disease (GBD) study authors to regard the <i>disability-adjusted life year</i> (DALY) primarily as a <i>descriptive</i> health metric. During the first phase of the GBD (1990-1996), it was widely acknowledged that the DALY had built-in <i>evaluative</i> assumptions. However, from the publication of the 2010 GBD and onwards, two central evaluative practices-<i>time discounting</i> and <i>age-weighting</i>-have been omitted from the DALY model. After this substantial revision, the emerging view now appears to be that the DALY is primarily a descriptive measure. Our aim in this article is to argue that the DALY, despite changes, remains largely evaluative. Our analysis focuses on the understanding of the DALY by comparing the DALY as a measure of disease burden in the two most significant phases of GBD publications, from their beginning (1990-1996) to the most recent releases (2010-2017). We identify numerous assumptions underlying the DALY and group them as descriptive or evaluative. We conclude that while the DALY model arguably has become more descriptive, it remains, by necessity, largely evaluative.</p>","PeriodicalId":49136,"journal":{"name":"Public Health Ethics","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2020-10-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1093/phe/phaa030","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38776602","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}
Pub Date : 2020-10-28eCollection Date: 2020-07-01DOI: 10.1093/phe/phaa032
Marcel Verweij, Angus Dawson
{"title":"Public Health Ethics in a Pandemic.","authors":"Marcel Verweij, Angus Dawson","doi":"10.1093/phe/phaa032","DOIUrl":"10.1093/phe/phaa032","url":null,"abstract":"","PeriodicalId":49136,"journal":{"name":"Public Health Ethics","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2020-10-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/d8/5d/phaa032.PMC7700793.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38351366","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}