{"title":"Ethical Issues in Genetic Epidemiology","authors":"S. Fullerton, K. Edwards, M. Austin","doi":"10.1079/9781780641812.0166","DOIUrl":"https://doi.org/10.1079/9781780641812.0166","url":null,"abstract":"This chapter reviews the breakthrough discovery of the complete sequence of human DNA in 2003, which rapidly ushered in an era of genomics and big data. It discusses “precision medicine,” which refers to the notion of accounting for individual variability in genes, environment, and lifestyle to devise new ways to prevent, detect, diagnose, and treat health conditions. It also describes “precision public health” as the related effort to use individual variability to more finely tailor preventive interventions for at-risk groups and improve population health. The chapter addresses scientific questions about the roles of genes, environmental, gene–gene, and gene–environment interactions in human health through the rigorous study of genotypic, phenotypic, and environmental data in human populations. It tackles the genomic contributions to health and disease, such as the assessment of whether diseases and gene variants show correlated transmission among related individuals.","PeriodicalId":211779,"journal":{"name":"Ethics and Epidemiology","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2021-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"128456683","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Solidarity and the Common Good","authors":"B. Jennings","doi":"10.1093/oso/9780197587058.003.0003","DOIUrl":"https://doi.org/10.1093/oso/9780197587058.003.0003","url":null,"abstract":"This chapter offers an account of individual rights and agency, and it considers both the liberal dimension and the communitarian dimension of public health ethics. It examines the relationship between social justice and social epidemiology and offers a particular interpretation of social justice as being crucially informed by a relational ethics of mutuality and solidarity. It provides a study premised on the hypothesis that relational theorizing and conceptualization developed in ecological epidemiology has its analogue in ethics. The chapter discusses how relational theorizing in both ethics and epidemiology can provide a promising pathway to a critical public health ethics. It considers the philosophy of epidemiology and the constitutive concepts guiding relational or social theorizing in the field.","PeriodicalId":211779,"journal":{"name":"Ethics and Epidemiology","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2021-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"124192211","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Ethics, Epidemiology, and Changing Perspectives on AIDS","authors":"C. Levine","doi":"10.1093/oso/9780197587058.003.0009","DOIUrl":"https://doi.org/10.1093/oso/9780197587058.003.0009","url":null,"abstract":"This chapter highlights the current state of HIV/AIDS care that fits Lewis Thomas’s 1971 definition of a “halfway technology.” It explains halfway technology as an intermediate stage between “nontechnology” and as a supportive medical care that does little to affect the course of disease, while “high” or “transformative technology” depends on advances in basic sciences. It also clarifies that transformative technology included immunization, chemotherapy, and antibiotics, while halfway technologies included dialysis, organ transplants, and mechanical ventilation. The chapter focuses on AIDS, which is as much a concern in the twenty-first century as it was forty years ago. It elaborates how the AIDS epidemic is ravaging African countries, such as South Africa and Nigeria; spreading in parts of Asia, such as Thailand and the Philippines; in Eastern Europe in countries like Russia and Ukraine; and in Caribbean and Central American countries.","PeriodicalId":211779,"journal":{"name":"Ethics and Epidemiology","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2021-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"122031276","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Understanding the Ethics of Risk as Used in Epidemiology","authors":"Diego S. Silva","doi":"10.1093/oso/9780197587058.003.0004","DOIUrl":"https://doi.org/10.1093/oso/9780197587058.003.0004","url":null,"abstract":"This chapter analyzes the concept of risk that is central to epidemiology, since the study of disease or health of populations necessarily requires assessing and determining the probability of the factors that may increase or decrease the likelihood of disease or health. It argues that the purportedly non-normative understanding of risk in epidemiology fails to capture separate but interrelated points, such as the description of risk assessments. It also discusses the importance of risk to a population for disease p to understand the political or economic values that help create the context that led to the increased risk. The chapter delves into the ethical significance for epidemiologists to help analyze and explain who imposed risk onto whom and in what ways this risk imposition occurred. It cites a normative sense of risk in epidemiology, which appeals to most theories of justice and makes sense of the ethics of causation in either more modest or stronger terms.","PeriodicalId":211779,"journal":{"name":"Ethics and Epidemiology","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2021-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"124126450","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Ethical Issues in the Design and Conduct of Community-Based Intervention Studies","authors":"M. Kegler, S. Coughlin, K. Glanz","doi":"10.1093/oso/9780197587058.003.0006","DOIUrl":"https://doi.org/10.1093/oso/9780197587058.003.0006","url":null,"abstract":"This chapter examines the scientific, methodological, and practical foundations of community-based intervention research that bear on ethical concerns. It begins with a description of community-based intervention research, including intervention strategies, study designs, and data collection methods. Given the major role of partnerships in community-based research, it also analyzes ethical issues along a continuum of community-engaged research and discusses the establishment, implementation and dissemination phases of community engaged research. The chapter covers considerations for working with vulnerable or disadvantaged communities, as well as considerations for ethical issues in a global context. It discusses traditional ethical principles in research and briefly reviews professional codes of ethics with implications for community-based intervention research.","PeriodicalId":211779,"journal":{"name":"Ethics and Epidemiology","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2021-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"133458086","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Historical Foundations","authors":"S. Coughlin","doi":"10.1093/acprof:oso/9780195322934.003.0001","DOIUrl":"https://doi.org/10.1093/acprof:oso/9780195322934.003.0001","url":null,"abstract":"This chapter considers the history of the rise of ethical concerns in the public health movement and epidemiology, which is the study of the distribution and determinants of disease in human populations. It explains that epidemiology is a basic science in public health. It also provides an overview of early developments in public health and ethics. The chapter looks at recent developments, including the origins of bioethics, regulatory safeguards for human subjects research, public health ethics, and contemporary epidemiological ethics. It begins with the end of the Middle Ages, wherein few advances were made in public health except for the control of a very limited number of communicable diseases achieved through the segregation and quarantine of persons thought to be infectious.","PeriodicalId":211779,"journal":{"name":"Ethics and Epidemiology","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2021-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"122079868","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Ethics Curricula in Epidemiology","authors":"K. Goodman, R. Prineas","doi":"10.1093/ACPROF:OSO/9780195322934.003.0014","DOIUrl":"https://doi.org/10.1093/ACPROF:OSO/9780195322934.003.0014","url":null,"abstract":"This chapter looks at reasons to broaden the emphasis on ethics and epidemiology, clarifying epidemiology as a basic discipline the security and rigor of which are essential for developing an informed health policy. It argues that applied ethics can usefully guide debates in ethics and epidemiology ranging from research with human subjects and large-scale surveillance to pandemic preparedness and response. It points out how sloppy research or moral shortcomings weaken scientific conclusions and elaborates the need to instruct students and practitioners in professional practice standards and in the moral foundations of scientific inquiry. It also speculates whether flawed science has adverse health and economic consequences if it is used as a basis for public health policy. The chapter explores the extent to which incompetent science can lead to wasted public resources or poorer public health.","PeriodicalId":211779,"journal":{"name":"Ethics and Epidemiology","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2009-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"121138265","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Epidemiology and Informed Consent","authors":"J. Kahn, A. Mastroianni","doi":"10.1093/ACPROF:OSO/9780195322934.003.0004","DOIUrl":"https://doi.org/10.1093/ACPROF:OSO/9780195322934.003.0004","url":null,"abstract":"This chapter focuses on informed consent, which is a central concept and practice in the protection of the rights and interests of both patients receiving clinical care and individuals participating in research. It addresses the commitment to the ethical principles underlying informed consent that dates back to the early twentieth century, as reflected in many countries' laws governing the physician–patient relationship. It also recounts how informed consent was codified into national policies and international guidelines and standards for research on human subjects. The chapter explores the parallel origins of informed consent and its applications, which are based on distinctions between clinical practice and research and do not naturally apply to or readily translate to epidemiology. It outlines the requirements for consent that have been and are treated differently in epidemiology depending on the type of activity and sometimes the practicability of seeking consent from participants.","PeriodicalId":211779,"journal":{"name":"Ethics and Epidemiology","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2009-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"115988853","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Ethics in Public Health Practice","authors":"R. Mckeown, R. Learner","doi":"10.1093/ACPROF:OSO/9780195322934.003.0008","DOIUrl":"https://doi.org/10.1093/ACPROF:OSO/9780195322934.003.0008","url":null,"abstract":"This chapter outlines a foundation for addressing ethical concerns in public health practice, which is informed by the approach of Alasdair MacIntyre's definition of practice. It talks about the goal of public health and views practice as directed toward fulfillment of that goal and related goods, providing a common ground on which to base further discussions. It cites the foundational values of public health practice in identifying the common moral governance. It also looks at a common element of recent arguments on the importance and value of health that is necessarily for human well-being and flourishing, a perspective essential for discussions of the role of human rights and equity in public health ethics. The chapter delves into considerations of value that are related to the ends of public health but are also critical in the assessment and implementation of how those ends are achieved. It highlights the task of ethics that involves a continuing examination of means and ends in an iterative process. Though written before the COVID-19 pandemic, the chapter addresses the importance of public health preparedness for disasters and pandemics, including an outline of Preventive Ethics as central to ethical planning and implementation of public health prevention and response.","PeriodicalId":211779,"journal":{"name":"Ethics and Epidemiology","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2009-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"129762680","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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