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Testing Baby
Testing Baby is the first book to draw on parents' experiences with newborn screening in order to examine its far-reaching sociological consequences. Newborn screening occurs almost always without parents' consent and often without their knowledge or understanding, yet it has the power to alter such things as family dynamics at the household level, the context of parenting, the way we manage disease identity, and how parents' interests are understood and solicited in policy debates. Rachel Grob's cautionary tale explores the powerful ways that parents' narratives have shaped this emotionally charged policy arena.
Disclosure Dilemmas
There exists today a fast growing availability of personal genetic information. Its prognostic impact and value for an individual or family member's health is sometimes unclear, whilst at other times it is clear-cut. The issue of whether to disclose genetic information does however have wide ranging implications. Avoiding the rhetoric of 'genetic exceptionalism', and drawing on an expanded field of bioethical, sociological and anthropological research, this book sets a new agenda for discussing the ethics surrounding the disclosure of prognostic genetic information. A hermeneutical approach reconsiders the ethics of disclosure in a variety of contexts in which genetic information is generate...
Patients as Policy Actors
Patients as Policy Actors offers groundbreaking accounts of one of the health field's most important developments of the last fifty years--the rise of more consciously patient-centered care and policymaking. The authors in this volume illustrate, from multiple disciplinary perspectives, the unexpected ways that patients can matter as both agents and objects of health care policy yet nonetheless too often remain silent, silenced, misrepresented, or ignored. The volume concludes with a unique epilogue outlining principles for more effectively integrating patient perspectives into a pluralistic conception of policy-making. With the recent enactment of the Patient Protection and Affordable Care Act, patients' and consumers' roles in American health care require more than ever the careful analysis and attention exemplified by this innovative volume.
Patients as Policy Actors
Patients as Policy Actors offers groundbreaking accounts of one of the health field's most important developments of the last fifty years--the rise of more consciously patient-centered care and policymaking. The authors in this volume illustrate, from multiple disciplinary perspectives, the unexpected ways that patients can matter as both agents and objects of health care policy yet nonetheless too often remain silent, silenced, misrepresented, or ignored. The volume concludes with a unique epilogue outlining principles for more effectively integrating patient perspectives into a pluralistic conception of policy-making. With the recent enactment of the Patient Protection and Affordable Care Act, patients' and consumers' roles in American health care require more than ever the careful analysis and attention exemplified by this innovative volume.
Testing Baby
Within forty-eight hours after birth, the heel of every baby in the United States has been pricked and the blood sent for compulsory screening to detect or rule out a large number of disorders. Newborn screening is expanding rapidly, fueled by the prospect of saving lives. Yet many lives are also changed by it in ways not yet recognized. Testing Baby is the first book to draw on parents’ experiences with newborn screening in order to examine its far-reaching sociological consequences. Rachel Grob’s cautionary tale also explores the powerful ways that parents’ narratives have shaped this emotionally charged policy arena. Newborn screening occurs almost always without parents’ consent and often without their knowledge or understanding, yet it has the power to alter such things as family dynamics at the household level, the context of parenting, the way we manage disease identity, and how parents’ interests are understood and solicited in policy debates.
Bodies Unbound
Bodies Unbound is a comparative study showing how ideologies of gendered bodies shape medical care and the ways in which patients respond to these ideologies through decisions about their bodies using three cases: transgender men seeking preventative gynecological care, cisgender men diagnosed with breast cancer, and cisgender women with breast cancer who elect to undergo prophylactic mastectomies. Bodies Unbound is a story about how the relationship between bodies and gender becomes socially intelligible as well as how medical professionals use their position of relative authority over bodies to dictate which combinations of bodies and genders are legitimate or not. Drawing on the experiences of individuals whose bodies and gender identities don't match medical and social expectations for gynecological and breast cancer care, Sledge unravels the taken-for-granted alignment of bodies and gender that provide the foundation of medical care in the United States.
From Residency to Retirement
From Residency to Retirement tells the stories of twenty American doctors over the last half century, which saw a period of continuous, turbulent, and transformative changes to the U.S. health care system. The cohort’s experiences are reflective of the generation of physicians who came of age as presidents Carter and Reagan began to focus on costs and benefits of health services. Mizrahi observed and interviewed these physicians in six timeframes ending in 2016. Beginning with medical school in the mid-1970s, these physicians reveal the myriad fluctuations and uncertainties in their professional practice, working conditions, collegial relationships, and patient interactions. In their own w...
Broadcasting Birth Control
Traditionally, the history of the birth control movement has been told through the accounts of the leaders, organizations, and legislation that shaped the campaign. Recently, historians have begun examining the cultural work of printed media, including newspapers, magazines, and even novels in fostering support for the cause. Broadcasting Birth Control builds on this new scholarship to explore the films and radio and television broadcasts developed by twentieth-century birth control advocates to promote family planning at home in the United States, and in the expanding international arena of population control. Mass media, Manon Parry contends, was critical to the birth control movement’s ...
Structural Intimacies
One of the most relevant social problems in contemporary American life is the continuing HIV epidemic in the Black population. With vivid ethnographic detail, this book brings together scholarship on the structural dimensions of the AIDS epidemic and the social construction of sexuality to assert that shifting forms of sexual stories—structural intimacies—are emerging, produced by the meeting of intimate lives and social structural patterns. These stories render such inequalities as racism, poverty, gender power disparities, sexual stigma, and discrimination as central not just to the dramatic, disproportionate spread of HIV in Black communities in the United States, but to the formation...
Managing Madness in the Community
While mental illness and mental health care are increasingly recognized and accepted in today’s society, awareness of the most severely mentally ill—as well as those who care for them—is still dominated by stereotypes. Managing Madness in the Community dispels the myth. Readers will see how treatment options often depend on the social status, race, and gender of both clients and carers; how ideas in the field of mental health care—conflicting priorities and approaches—actually affect what happens on the ground; and how, amid the competing demands of clients and families, government agencies, bureaucrats and advocates, the fragmented American mental health system really works—or d...
