Mara Buchbinder – författare

It has been close to six decades since Watson and Crick discovered the structure of DNA and more than ten years since the human genome was decoded. Today, through the collection and analysis of a small blood sample, every baby born in the United States is screened for more than fifty genetic disorders. Though the early detection of these abnormalities can potentially save lives, the test also has a high percentage of false positives-inaccurate results that can take a brutal emotional toll on parents before they are corrected. Now some doctors are questioning whether the benefits of these screenings outweigh the stress and pain they sometimes produce. In Saving Babies?, Stefan Timmermans and Mara Buchbinder evaluate the consequences and benefits of state-mandated newborn screening - and the larger policy questions they raise about the inherent inequalities in American medical care that limit the effectiveness of this potentially life - saving technology.Drawing on observations and interviews with families, doctors, and policy actors, Timmermans and Buchbinder have given us the first ethnographic study of how parents and geneticists resolve the many uncertainties in screening newborns. Ideal for scholars of medicine, public health, and public policy, this book is destined to become a classic in its field.

It has been close to six decades since Watson and Crick discovered the structure of DNA and more than ten years since the human genome was decoded. Today, through the collection and analysis of a small blood sample, every baby born in the United States is screened for more than fifty genetic disorders. Though the early detection of these abnormalities can potentially save lives, the test also has a high percentage of false positives - inaccurate results that can take a brutal emotional toll on parents before they are corrected. Now some doctors are questioning whether the benefits of these screenings outweigh the stress and pain they sometimes produce. In "Saving Babies?" Stefan Timmermans and Mara Buchbinder evaluate the consequences and benefits of state-mandated newborn screening - and the larger policy questions they raise about the inherent inequalities in American medical care that limit the effectiveness of this potentially lifesaving technology.Drawing on observations and interviews with families, doctors, and policy actors, Timmermans and Buchbinder have given us the first ethnographic study of how parents and geneticists resolve the many uncertainties in screening newborns. Ideal for scholars of medicine, public health, and public policy, this book is destined to become a classic in its field.

Although pain is a universal human experience, many view the pain of others as private, resistant to language, and, therefore, essentially unknowable. And, yet, despite the obvious limits to comprehending another's internal state, language is all that we have to translate pain from the solitary and unknowable to a phenomenon richly described in literature, medicine, and everyday life. Without denying the private dimensions of pain, All in Your Head offers an entirely fresh perspective that considers how pain may be configured, managed, explained, and even experienced in deeply relational ways. Drawing on ethnographic fieldwork in a pediatric pain clinic in California, Mara Buchbinder explores how clinicians, adolescent patients, and their families make sense of puzzling symptoms and work to alleviate pain. Through careful attention to the language of pain including narratives, conversations, models, and metaphors and detailed analysis of how young pain sufferers make meaning through interactions with others, her book reveals that however private pain may be, making sense of it is profoundly social.

Although pain is a universal human experience, many view the pain of others as private, resistant to language, and, therefore, essentially unknowable. And, yet, despite the obvious limits to comprehending another's internal state, language is all that we have to translate pain from the solitary and unknowable to a phenomenon richly described in literature, medicine, and everyday life. Without denying the private dimensions of pain, All in Your Head offers an entirely fresh perspective that considers how pain may be configured, managed, explained, and even experienced in deeply relational ways. Drawing on ethnographic fieldwork in a pediatric pain clinic in California, Mara Buchbinder explores how clinicians, adolescent patients, and their families make sense of puzzling symptoms and work to alleviate pain. Through careful attention to the language of pain - including narratives, conversations, models, and metaphors - and detailed analysis of how young pain sufferers make meaning through interactions with others, her book reveals that however private pain may be, making sense of it is profoundly social.

How the legalization of assisted dying is changing our lives.Over the past five years, medical aid-in-dying (also known as assisted suicide) has expanded rapidly in the United States and is now legally available to one in five Americans. This growing social and political movement heralds the possibility of a new era of choice in dying. Yet very little is publicly known about how medical aid-in-dying laws affect ordinary citizens once they are put into practice. Sociological studies of new health policies have repeatedly demonstrated that the realities often fall short of advocacy visions, raising questions about how much choice and control aid-in-dying actually affords.  Scripting Death chronicles two years of ethnographic research documenting the implementation of Vermont’s 2013 Patient Choice and Control at End of Life Act. Author Mara Buchbinder weaves together stories collected from patients, caregivers, health care providers, activists, and legislators to illustrate how they navigate aid-in-dying as a new medical frontier in the aftermath of legalization. Scripting Death explains how medical aid-in-dying works, what motivates people to pursue it, and ultimately, why upholding the “right to die” is very different from ensuring access to this life-ending procedure. This unprecedented, in-depth account uses the case of assisted death as an entry point into ongoing cultural conversations about the changing landscape of death and dying in the United States.

How the legalization of assisted dying is changing our lives.Over the past five years, medical aid-in-dying (also known as assisted suicide) has expanded rapidly in the United States and is now legally available to one in five Americans. This growing social and political movement heralds the possibility of a new era of choice in dying. Yet very little is publicly known about how medical aid-in-dying laws affect ordinary citizens once they are put into practice. Sociological studies of new health policies have repeatedly demonstrated that the realities often fall short of advocacy visions, raising questions about how much choice and control aid-in-dying actually affords.  Scripting Death chronicles two years of ethnographic research documenting the implementation of Vermont’s 2013 Patient Choice and Control at End of Life Act. Author Mara Buchbinder weaves together stories collected from patients, caregivers, health care providers, activists, and legislators to illustrate how they navigate aid-in-dying as a new medical frontier in the aftermath of legalization. Scripting Death explains how medical aid-in-dying works, what motivates people to pursue it, and ultimately, why upholding the “right to die” is very different from ensuring access to this life-ending procedure. This unprecedented, in-depth account uses the case of assisted death as an entry point into ongoing cultural conversations about the changing landscape of death and dying in the United States.

Amid ongoing debate about health care reform, the need for informedanalyses of health policy is greater than ever. The twelve original essays inthis volume show that common public debates routinely bypass complexethical, sociocultural, historical, and political questions about how we shouldaddress ideals of justice and equality in health care. Integrating perspectivesfrom the humanities, social sciences, medicine, and public health, the contributorsilluminate the relationships between justice and health inequalitiesto complicate and enrich debates often dominated by simplistic narratives.Understanding Health Inequalities and Justice grounds key conceptualdiscussions in timely case studies and policy analyses that explore threeoverarching questions: first, how do scholars approach relations betweenhealth inequalities and ideals of justice; second, when do justice considerationsinform solutions to health inequalities, and how do specific healthinequalities affect perceptions of injustice; and third, how can diverse scholarlyapproaches contribute to better health policy? From addressing patientagency in an inequitable health care environment to examining how scholarsof social justice and health care amass evidence, this volume combines theskills and sensibilities of diverse scholars to promote a richer understandingof health and justice and the successful paths to their realization.The contributors are Judith C. Barker, Paula Braveman, Paul Brodwin,Jami Suki Chang, Debra DeBruin, Leslie A. Dubbin, Sarah Horton, Carla C.Keirns, J. Paul Kelleher, Nicholas B. King, Eva Feder Kittay, Joan Liaschenko,Anne Drapkin Lyerly, Mary Faith Marshall, Carolyn Mokley Rouse, JenniferPrah Ruger, and Janet K. Shim.

Amid ongoing debate about health care reform, the need for informedanalyses of health policy is greater than ever. The twelve original essays inthis volume show that common public debates routinely bypass complexethical, sociocultural, historical, and political questions about how we shouldaddress ideals of justice and equality in health care. Integrating perspectivesfrom the humanities, social sciences, medicine, and public health, the contributorsilluminate the relationships between justice and health inequalitiesto complicate and enrich debates often dominated by simplistic narratives.Understanding Health Inequalities and Justice grounds key conceptualdiscussions in timely case studies and policy analyses that explore threeoverarching questions: first, how do scholars approach relations betweenhealth inequalities and ideals of justice; second, when do justice considerationsinform solutions to health inequalities, and how do specific healthinequalities affect perceptions of injustice; and third, how can diverse scholarlyapproaches contribute to better health policy? From addressing patientagency in an inequitable health care environment to examining how scholarsof social justice and health care amass evidence, this volume combines theskills and sensibilities of diverse scholars to promote a richer understandingof health and justice and the successful paths to their realization.The contributors are Judith C. Barker, Paula Braveman, Paul Brodwin,Jami Suki Chang, Debra DeBruin, Leslie A. Dubbin, Sarah Horton, Carla C.Keirns, J. Paul Kelleher, Nicholas B. King, Eva Feder Kittay, Joan Liaschenko,Anne Drapkin Lyerly, Mary Faith Marshall, Carolyn Mokley Rouse, JenniferPrah Ruger, and Janet K. Shim.

The extensively updated and revised third edition of the bestselling Social Medicine Reader provides a survey of the challenging issues facing today's health care providers, patients, and caregivers by bringing together moving narratives of illness, commentaries by physicians, debates about complex medical cases, and conceptually and empirically based writings by scholars in medicine, the social sciences, and the humanities.Volume 1, Ethics and Cultures of Biomedicine, contains essays, case studies, narratives, fiction, and poems that focus on the experiences of illness and of clinician-patient relationships. Among other topics the contributors examine the roles and training of professionals alongside the broader cultures of biomedicine; health care; experiences and decisions regarding death, dying, and struggling to live; and particular manifestations of injustice in the broader health system. The Reader is essential reading for all medical students, physicians, and health care providers.

The extensively updated and revised third edition of the bestselling Social Medicine Reader provides a survey of the challenging issues facing today's health care providers, patients, and caregivers with writings by scholars in medicine, the social sciences, and the humanities.

The extensively updated and revised third edition of the bestselling Social Medicine Reader provides a survey of the challenging issues facing today's health care providers, patients, and caregivers by bringing together moving narratives of illness, commentaries by physicians, debates about complex medical cases, and conceptually and empirically based writings by scholars in medicine, the social sciences, and the humanities.Volume 1, Ethics and Cultures of Biomedicine, contains essays, case studies, narratives, fiction, and poems that focus on the experiences of illness and of clinician-patient relationships. Among other topics the contributors examine the roles and training of professionals alongside the broader cultures of biomedicine; health care; experiences and decisions regarding death, dying, and struggling to live; and particular manifestations of injustice in the broader health system. The Reader is essential reading for all medical students, physicians, and health care providers.