{"title":"The Trouble with Child Poverty","authors":"Mary Breheny","doi":"10.1353/pbm.2023.a909727","DOIUrl":"https://doi.org/10.1353/pbm.2023.a909727","url":null,"abstract":"abstract: In research, in policy, and in the media, there is a clear focus on alleviating child poverty. Child poverty is cast as an urgent societal problem, in part reflecting recognition of the impact of early life circumstances on health across the life course. However, focusing on child poverty can have unintended consequences. First, calls to alleviate child poverty position children as a worthy investment in future population health, while adult poverty is represented as a misallocation of scarce resources. Second, children are positioned as blameless in talk about child poverty, whereas adults are viewed as potentially blameworthy for living in poverty. This ignores the ways early poverty shapes opportunities throughout the life course. These accounts are inconsistent: if a childhood of poverty shapes long-term outcomes, then poverty in adulthood cannot be an individual failing. Building arguments for poverty alleviation on social investment and personal responsibility ultimately supports rather than undermines the social structural arrangements that entrench inequalities. Recognizing the interconnectedness of families and communities and the destructiveness of poverty at every point in the life course has the potential to improve health in a way that can never be achieved by focusing solely on child poverty.","PeriodicalId":54627,"journal":{"name":"Perspectives in Biology and Medicine","volume":"80 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135735988","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Careful the Things You Say, Children Will Listen: Parents, Adolescents, and Fairytales","authors":"Daniel J. Benedetti, Benjamin S. Wilfond","doi":"10.1353/pbm.2023.a909726","DOIUrl":"https://doi.org/10.1353/pbm.2023.a909726","url":null,"abstract":"abstract: Being a parent is hard, particularly parenting adolescents, who need to be given choices and allowed the space to learn how to make choices for themselves, even when those choices result in negative consequences. This essay explores how Steven Sondheim and James Lapine's 1987 musical Into the Woods provides relatable stories of the challenges of being a parent, the challenges of parenting adolescents, and just how messy parents and families can be despite everyone trying their best. The stories of Little Red Riding Hood, Rapunzel, Jack, and Cinderella show us various stages, trajectories, and occasional tragedies of adolescents' emerging autonomy, while the Baker's and the Witch's struggles becoming and being parents encapsulate how disorderly and untidy parenting often is. Pediatricians and clinical bioethicists, who are often in a position to scrutinize the choices of parents and teens, should remember that parents and adolescents are almost always motivated by good intentions and doing the best that they can. Perhaps the best we can do is accompany them on their journey \"into the woods.\"","PeriodicalId":54627,"journal":{"name":"Perspectives in Biology and Medicine","volume":"35 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135735787","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
A. Lewis, Santiago J. Molina, P. Appelbaum, B. Dauda, A. Fuentes, Stephanie M. Fullerton, N. Garrison, Nayanika Ghosh, R. C. Green, Evelynn M. Hammonds, J. Jeff, David S. Jones, E. Kenny, P. Kraft, Madelyn Mauro, A. Ori, Aaron Panofsky, M. Sohail, B. Neale, D. Allen
{"title":"An Ethical Framework for Research Using Genetic Ancestry","authors":"A. Lewis, Santiago J. Molina, P. Appelbaum, B. Dauda, A. Fuentes, Stephanie M. Fullerton, N. Garrison, Nayanika Ghosh, R. C. Green, Evelynn M. Hammonds, J. Jeff, David S. Jones, E. Kenny, P. Kraft, Madelyn Mauro, A. Ori, Aaron Panofsky, M. Sohail, B. Neale, D. Allen","doi":"10.1353/pbm.0.0176","DOIUrl":"https://doi.org/10.1353/pbm.0.0176","url":null,"abstract":"ABSTRACT:A wide range of research uses patterns of genetic variation to infer genetic similarity between individuals, typically referred to as genetic ancestry. This research includes inference of human demographic history, understanding the genetic architecture of traits, and predicting disease risk. Researchers are not just structuring an intellectual inquiry when using genetic ancestry, they are also creating analytical frameworks with broader societal ramifications. This essay presents an ethics framework in the spirit of virtue ethics for these researchers: rather than focus on rule following, the framework is designed to build researchers’ capacities to react to the ethical dimensions of their work. The authors identify one overarching principle of intellectual freedom and responsibility, noting that freedom in all its guises comes with responsibility, and they identify and define four principles that collectively uphold researchers’ intellectual responsibility: truthfulness, justice and fairness, anti-racism, and public beneficence. Researchers should bring their practices into alignment with these principles, and to aid this, the authors name three common ways research practices infringe these principles, suggest a step-by-step process for aligning research choices with the principles, provide rules of thumb for achieving alignment, and give a worked case. The essay concludes by identifying support needed by researchers to act in accord with the proposed framework.","PeriodicalId":54627,"journal":{"name":"Perspectives in Biology and Medicine","volume":"66 1","pages":"225 - 248"},"PeriodicalIF":1.0,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48535432","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"The Diversity of Institutions Conducting Biomedical Research","authors":"J. Flier","doi":"10.1353/pbm.0.0175","DOIUrl":"https://doi.org/10.1353/pbm.0.0175","url":null,"abstract":"Biomedical research in the United States has contributed enormously to science and human health and is conducted in several thousand institutions that vary widely in their histories, missions, operations, size, and cultures. Though these institutional differences have important consequences for the research they conduct, the organizational taxonomy of US biomedical research has received scant systematic attention. Consequently, many observers and even participants are surprisingly unaware of important distinguishing attributes of these diverse institutions. This essay provides a high-level taxonomy of the institutional ecosystem of US biomedical research; illustrates key features of the ecosystem through portraits of eight institutions of varying age, size, culture, and missions, each representing a much larger class exhibiting additional diversity; and suggests topics for future research into the research output of institutional types that will be required to develop novel approaches to improving the function of the ecosystem.","PeriodicalId":54627,"journal":{"name":"Perspectives in Biology and Medicine","volume":"1 1","pages":"-"},"PeriodicalIF":1.0,"publicationDate":"2023-02-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"66500644","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"On Antiscience and Antisemitism.","authors":"Peter Hotez","doi":"10.1353/pbm.2023.a902035","DOIUrl":"10.1353/pbm.2023.a902035","url":null,"abstract":"<p><p>Recent surges in antivaccine activism and other antiscience trends now converge with rising antisemitism. During the COVID-19 pandemic, authoritarian elements from the far right in North America and Europe often invoked Nazi imagery to describe vaccinations or at times even blame the Jewish people for COVID-19 origins and vaccine profiteering. Such tropes represent throwbacks to the 14th century, when European Jews were persecuted during the time of the bubonic plague. This article provides both historical and recent perspectives on the links between antiscience and antisemitism, together with the author's personal experience as a Jewish vaccine scientist targeted by both dark forces. New approaches to uncoupling antisemitism from antiscience, while combating both, are essential for saving lives and preserving democratic values.</p>","PeriodicalId":54627,"journal":{"name":"Perspectives in Biology and Medicine","volume":"66 1","pages":"420-436"},"PeriodicalIF":1.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48030095","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Historical Lessons on Vaccine Hesitancy: Smallpox, Polio, and Measles, and Implications for COVID-19.","authors":"J J Eddy, H A Smith, J E Abrams","doi":"10.1353/pbm.2023.0008","DOIUrl":"10.1353/pbm.2023.0008","url":null,"abstract":"<p><p>Vaccine hesitancy continues to pose a formidable obstacle to increasing national COVID-19 vaccination rates in the US, but this is not the first time that American vaccination efforts have confronted resistance and apathy. This study examines the history of US vaccination efforts against smallpox, polio, and measles, highlighting persistent drivers of vaccine hesitancy as well as factors that helped overcome it. The research reveals that logistical barriers, negative portrayals in the media, and fears about safety stymied inoculation efforts as early as the 18th century and continue to do so. However, vaccine hesitancy has been markedly diminished when trusted community leaders have guided efforts, when ordinary citizens have felt personally invested in the success of the vaccine, and when vaccination efforts have been tied to broader projects to improve public health and social cohesion. Deliberately cultivating such factors could be an effective strategy for lessening opposition today, when COVID-19's distinctive characteristics make addressing vaccine hesitancy more urgent than it has ever been.</p>","PeriodicalId":54627,"journal":{"name":"Perspectives in Biology and Medicine","volume":"66 1","pages":"145-159"},"PeriodicalIF":1.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47338573","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"The Demise of the AMA's Mission to Improve Public Health.","authors":"John Abramson","doi":"10.1353/pbm.2023.0017","DOIUrl":"https://doi.org/10.1353/pbm.2023.0017","url":null,"abstract":"<p><p>Much has been written about the deplorable state of American health care, but rarely with the wealth of historical and political information packed into Peter Swenson's Disorder: A History of Reform, Reaction, and Money in American Medicine (2021). In this meticulously researched and comprehensive study of the role of organized medicine, particularly the American Medical Association (AMA) and affiliated state and county medical societies, Swenson provides detailed insight into the AMA's political evolution from a force advocating progressive reforms to a protective guild backed by powerful economic and ideological interests. Swenson addresses the conflicts leading to and arising from these movements, always with an eye on the profession's failure over the last century to fulfill its implicit social contract. Swenson describes the American medical disorder without fear or favor, including a public health system in disarray, defective government regulation of drugs, unchecked and concealed commercial influence on medical research, publications, and clinical guidelines. Swenson's hope is clear: that a progressively reformed AMA-combined with a broad coalition of concerned citizens and legislators-will lead the medical profession back to its rightful mission.</p>","PeriodicalId":54627,"journal":{"name":"Perspectives in Biology and Medicine","volume":"66 2","pages":"312-326"},"PeriodicalIF":1.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41152409","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Making and Managing New Biological Entities: conceptual, ontological, epistemological, and ethical aspects.","authors":"Bjørn Hofmann","doi":"10.1353/pbm.2023.0020","DOIUrl":"https://doi.org/10.1353/pbm.2023.0020","url":null,"abstract":"<p><p>Novel biotechnologies produce new person-related biological entities, such as cell lines, organoids, and synthetic organisms, that tend to disrupt existing concepts, taxonomies, modes of evidence production, as well as moral norms and values. This raises the question of how we can manage these new person-related biological entities. This article identifies and analyzes key conceptual, ontological, epistemological, and ethical aspects of such entities in order to suggest how to make, manage, and regulate them. It argues that in order to avoid conceptual vagueness and taxonomic confusion, it is important to clarify how person-related biological entities relate to existing concepts and to make new concepts where necessary. Ontologically, we need to determine the thing- and person-likeness of such entities. Epistemically, we must provide measures to verify the characteristics of person-related biological entities and to provide high-quality knowledge of their implications (outcomes). And ethically, we must clarify the moral status, rights, and responsibility for and of the entities, and how they will change our norms and values. Addressing these issues up front may improve our making and managing of person-related biological entities.</p>","PeriodicalId":54627,"journal":{"name":"Perspectives in Biology and Medicine","volume":"66 2","pages":"211-224"},"PeriodicalIF":1.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41159526","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"The Impact of Transmissible Microbes: How the Cystic Fibrosis Community Mobilized Against Cepacia.","authors":"Rebecca Mueller","doi":"10.1353/pbm.2023.0005","DOIUrl":"10.1353/pbm.2023.0005","url":null,"abstract":"<p><p>Long before COVID-19 made social distancing familiar, people with cystic fibrosis (CF) already practiced such behaviors. CF is held up as a classic example of genetic disease, yet people with CF are also susceptible to bacteria from the environment and from other CF patients. Starting in the 1980s, a bacterial epidemic in the CF population highlighted clashing priorities of connection, physical safety, and environmental protection. Policymakers ultimately called for the physical separation of people with CF from one another via recommendations that reconfigured the CF community. Simultaneously, medical researchers recognized that one highly transmissible CF pathogen called cepacia was being developed for environmental applications and got the EPA to limit cepacia's environmental deployment. Environmental regulations speak to the challenge of useful microbes that harm a minority, but CF cross-infection also involves legal implications for microbial and genetic discrimination, social consequences for CF communities, and ethical questions about balancing autonomy, harms, and benefits. As scientists increasingly study connections between host genetics, microbial genetics, and infectious risks, CF is a vital referent.</p>","PeriodicalId":54627,"journal":{"name":"Perspectives in Biology and Medicine","volume":"66 1","pages":"89-106"},"PeriodicalIF":1.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11104521/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44606534","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Elephants, Personhood, and Moral Status.","authors":"David DeGrazia","doi":"10.1353/pbm.2023.0001","DOIUrl":"10.1353/pbm.2023.0001","url":null,"abstract":"<p><p>This essay uses the lens of moral status to explore the question of whether elephants ought to count as persons under the law. After distinguishing descriptive, moral, and legal concepts of personhood, the author argues that elephants are (descriptively) at least \"borderline persons,\" justifying an attribution of full moral status and, thereby, a solid basis for legal personhood. A final section examines broad implications of elephant personhood.</p>","PeriodicalId":54627,"journal":{"name":"Perspectives in Biology and Medicine","volume":"66 1","pages":"3-14"},"PeriodicalIF":1.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49324694","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}