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2.
Am J Bioeth ; 23(1): 12-24, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36219208

RESUMO

While experience often affords important knowledge and insight that is difficult to garner through observation or testimony alone, it also has the potential to generate conflicts of interest and unrepresentative perspectives. We call this tension the paradox of experience. In this paper, we first outline appeals to experience made in debates about access to unproven medical products and disability bioethics, as examples of how experience claims arise in bioethics and some of the challenges raised by these claims. We then motivate the idea that experience can be an asset by appealing to themes in feminist and moral epistemology, distinguishing between epistemic and justice-based appeals. Next, we explain the concern that experience may be a liability by appealing to empirical work on cognitive biases and theoretical work about the problem of partial representation. We conclude with preliminary recommendations for addressing the paradox and offer several questions for future discussion.


Assuntos
Bioética , Humanos , Princípios Morais , Feminismo , Justiça Social
4.
Contemp Clin Trials ; 119: 106806, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35654303

RESUMO

Despite great need for improved understanding of the use of drugs and biological products in pregnancy, clinical trials in pregnancy are rare, therapeutics in pregnancy are woefully understudied, and pregnant individuals are routinely excluded as trial participants. Recently, however, the U.S. Food and Drug Administration (FDA) has signaled strong support for advancing scientific research with pregnant populations, marking a significant shift from the past. Over the last sixty years, precaution and fear have largely characterized clinical research in pregnancy, deriving in large part from a protectionist ethic that materialized after the thalidomide drug disaster. FDA reviewer Frances Kelsey courageously prevented thalidomide from being marketed in the United States, and her work guided and solidified the FDA's image as protector of the general population from unsafe and ineffective drugs. Yet, when it comes to protection, pregnant persons have been left behind, and experts refer to the "shadows of thalidomide" that hamper clinical trials in pregnancy. Drawing on analysis of Frances Kelsey's archived papers in addition to focused media coverage of Kelsey and thalidomide, we discuss the durable cultural narrative surrounding Kelsey's important work. We argue that revisiting Kelsey's legacy with attention to themes that have characterized her achievement-staying vigilant, prioritizing safety, and mitigating pharmaceutical-based harm-in fact facilitates progress toward the ethical obligation to protect pregnant people through research, toward the generation of pregnancy-specific data for evidence-based care, and toward realizing Kelsey's legacy of safeguarding pregnant people and their offspring from the harms of untested drugs.


Assuntos
Talidomida , Ensaios Clínicos como Assunto , Feminino , França , Humanos , Gravidez , Estados Unidos , United States Food and Drug Administration
5.
7.
New Genet Soc ; 34(2): 177-195, 2015 Apr 03.
Artigo em Inglês | MEDLINE | ID: mdl-26217167

RESUMO

The epigenetic "revolution" in science cuts across many disciplines, and it is now one of the fastest growing research areas in biology. Increasingly, claims are made that epigenetics research represents a move away from the genetic determinism that has been prominent both in biological research and in understandings of the impact of biology on society. We discuss to what extent an epigenetic framework actually supports these claims. We show that, in contrast to the received view, epigenetics research is often couched in language as deterministic as genetics research in both science and the popular press. We engage the rapidly emerging conversation about the impact of epigenetics on public discourse and scientific practice, and we contend that the notion of epigenetic determinism - or the belief that epigenetic mechanisms determine the expression of human traits and behaviors - matters for understandings of the influence of biology and society on population health.

8.
Gend Soc ; 27(6)2013 Nov 12.
Artigo em Inglês | MEDLINE | ID: mdl-24347818

RESUMO

In both social science and medicine, research on reproduction generally focuses on women. In this article, we examine how men's reproductive contributions are understood. We develop an analytic framework that brings together Cynthia Daniels' conceptualization of reproductive masculinity (2006) with a staged view of reproduction, where the stages include the period before conception, conception, gestation, and birth. Drawing on data from two medical sites that are oriented to the period before pregnancy (preconception health care and sperm banks), we examine how gendered knowledge about reproduction produces different reproductive equations in different stages of the reproductive process. We conclude with a new research agenda that emerges from rethinking the role of men and masculinity in reproduction.

9.
Soc Sci Med ; 90: 49-55, 2013 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-23746608

RESUMO

As medical reports over the last decade indicate that food allergies among children are on the rise, peanut allergies in particular have become a topic of intense social debate. While peanut allergies are potentially fatal, they affect very few children at the population level. Yet, peanut allergies are characterized in medical and popular literature as a rising "epidemic," and myriad and broad-based social responses have emerged to address peanut allergy risk in public spaces. This analysis compares medical literature to other textual sources, including media reports, legislation, and advocacy between 1980 and 2010 in order to examine how peanut allergies transformed from a rare medical malady into a contemporary public health problem. I argue that the peanut allergy epidemic was co-constructed through interactions between experts, publics, biomedical categories, and institutions, while social reactions to the putative epidemic expanded the sphere of surveillance and awareness of peanut allergy risk. The characterization of the peanut allergy problem as an epidemic was shaped by mobility across social sites, with both discursive and material effects.


Assuntos
Atitude Frente a Saúde , Epidemias , Hipersensibilidade a Amendoim/epidemiologia , Hipersensibilidade a Amendoim/psicologia , Mudança Social , Criança , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Pânico , Vigilância da População , Medição de Risco , Estados Unidos/epidemiologia
10.
J Health Polit Policy Law ; 38(2): 345-71, 2013 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-23262764

RESUMO

Since the 1980s, maternal and child health experts have sought to redefine maternity care to include the period prior to pregnancy, essentially by expanding the concept of prenatal care to encompass the time before conception. In 2004, the Centers for Disease Control and Prevention endorsed and promoted this new definition when it launched the Preconception Health and Health Care Initiative. In arguing that prenatal care was often too little too late, a group of maternal and child health experts in the United States attempted to spur improvements in population health and address systemic problems in health care access and health disparities. By changing the terms of pregnancy risk and by using maternalism as a social policy strategy, the preconception health and health care paradigm promoted an ethic of anticipatory motherhood and conflated women's health with maternal health, sparking public debate about the potential social and clinical consequences of preconception care. This article tracks the construction of this policy idea and its ultimate potential utility in health and health policy discussions.


Assuntos
Política de Saúde , Formulação de Políticas , Cuidado Pré-Concepcional , Centers for Disease Control and Prevention, U.S. , Feminino , Humanos , Estados Unidos
11.
J Child Adolesc Psychiatr Nurs ; 25(2): 96-104, 2012 May.
Artigo em Inglês | MEDLINE | ID: mdl-22512527

RESUMO

PROBLEM: Greater understanding is needed related to qualitatively assess pregnancy intentions and rapid subsequent pregnancies among adolescent and adult mothers. METHODS: Four-site prospective study of 227 adolescent and adult mothers. Data were analyzed to understand the relationship between pregnancy intentions, adolescent status, and use of long-acting contraceptives and rapid subsequent pregnancy. FINDINGS: The findings from this study provide evidence of the importance of goal-oriented pregnancy intentions, long-acting contraceptive use, and older age in delaying a second pregnancy. CONCLUSION: Findings reveal the need for clinician awareness of the qualitative pregnancy intentions of young women and potential desired use of long-acting contraceptives.


Assuntos
Comportamento Contraceptivo , Anticoncepção/estatística & dados numéricos , Comportamento Materno , Mães/psicologia , Gravidez na Adolescência , Adolescente , Adulto , Fatores Etários , Feminino , Humanos , Lactente , Masculino , Relações Mãe-Filho , Mães/estatística & dados numéricos , Gravidez , Estudos Prospectivos
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