Personalised Medicine Individual Choice And The Common Good
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Me Medicine vs. We Medicine by Donna Dickenson Pdf
Personalized healthcare—or what the award-winning author Donna Dickenson calls "Me Medicine"—is radically transforming our longstanding "one-size-fits-all" model. Technologies such as direct-to-consumer genetic testing, pharmacogenetically developed therapies in cancer care, private umbilical cord blood banking, and neurocognitive enhancement claim to cater to an individual's specific biological character, and, in some cases, these technologies have shown powerful potential. Yet in others they have produced negligible or even negative results. Whatever is behind the rise of Me Medicine, it isn't just science. So why is Me Medicine rapidly edging out We Medicine, and how has our commitment to our collective health suffered as a result? In her cogent, provocative analysis, Dickenson examines the economic and political factors fueling the Me Medicine phenomenon and explores how, over time, this paradigm shift in how we approach our health might damage our individual and collective well-being. Historically, the measures of "We Medicine," such as vaccination and investment in public-health infrastructure, have radically extended our life spans, and Dickenson argues we've lost sight of that truth in our enthusiasm for "Me Medicine." Dickenson explores how personalized medicine illustrates capitalism's protean capacity for creating new products and markets where none existed before—and how this, rather than scientific plausibility, goes a long way toward explaining private umbilical cord blood banks and retail genetics. Drawing on the latest findings from leading scientists, social scientists, and political analysts, she critically examines four possible hypotheses driving our Me Medicine moment: a growing sense of threat; a wave of patient narcissism; corporate interests driving new niche markets; and the dominance of personal choice as a cultural value. She concludes with insights from political theory that emphasize a conception of the commons and the steps we can take to restore its value to modern biotechnology.
Can precision medicine be personal; Can personalized medicine be precise? by Y. Michael Barilan,Margherita Brusa,Aaron Ciechanover Pdf
People have always sought medical care that is tailored to every individual patient. Alongside with the historical development of institutions of care, the vision of personal and 'holistic' care persisted. Patient-centred medicine, interpersonal communication and shared decision making have become central to medical practice and services. This evolving vision of 'personalized medicine' is in the forefront of medicine, creating debates among ethicists, philosophers and sociologists of medicine about the nature of disease and the definition of wellness, the impact on the daily life of patients, as well as its implications on low-income countries. Is increased 'precision' also an improvement on the personal aspects of care or erosion of privacy? Do 'precise' and 'personalized' approach marginalize public health, and can this care be personalized without attention to culture, economy and society? The book provides a multidisciplinary and interdisciplinary discussion of the ethos and ethics of precision/personal medicine, involving scientists who have shaped the field, in dialogue with ethicists, social scientists and philosophers of science. The contributing scholars come from all over the world and from different cultural backgrounds providing reflective perspectives of history of ideas, critical theory and technology assessment, together with the actual work done by pioneers in the field. It explores issues such as global justice, gender, public health, pharmaceutical industry, international law and religion, and explores themes discussed in relation to personalized medicine such as new-born screening and disorders of consciousness. This book will be of interest to academicians in bioethics, history of medicine, social sciences of medicine as well as general educated readers.
Why healthcare cannot—and should not—become data-driven, despite the many promises of intensified data sourcing. In contemporary healthcare, everybody seems to want more data, of higher quality, on more people, and to use this data for a wider range of purposes. In theory, such pervasive data collection should lead to a healthcare system in which data can quickly, efficiently, and unambiguously be interpreted and provide better care for patients, more efficient administration, enhanced options for research, and accelerated economic growth. In practice, however, data are difficult to interpret and the many purposes often undermine one another. In this book, anthropologist and STS scholar Klaus Hoeyer offers an in-depth look at the paradoxes surrounding healthcare data. Focusing on Denmark, a world leader in healthcare data infrastructures, Hoeyer shares the perspectives of different stakeholders, from epidemiologists to hospital managers, from patients to physicians, analyzing the social dynamics set in motion by data intensification and calling special attention to that which cannot be easily coded in a database. HHe illustrates how data can be at once helpful, overwhelming, and sometimes disastrous through concrete examples. The COVID-19 pandemic serves as a special closing case study that shows how these data paradoxes carry weighty political implications. By revealing the diverse and sometimes contradictory practices spawned by intensified data sourcing, Data Paradoxes raises vital questions about how we might better use healthcare data.
Mental Capacity, Dignity and the Power of International Human Rights by Julia Duffy Pdf
Explores how society's privileging of autonomy and of civil and political freedoms, fails to uphold the human rights of those with cognitive disability.
Personhood in the Age of Biolegality by Marc de Leeuw,Sonja van Wichelen Pdf
This volume showcases emerging interdisciplinary scholarship that captures the complex ways in which biological knowledge is testing the nature and structure of legal personhood. Key questions include: What do the new biosciences do to our social, cultural, and legal conceptions of personhood? How does our legal apparatus incorporate new legitimations from the emerging biosciences into its knowledge system? And what kind of ethical, socio-political, and scientific consequences are attached to the establishment of such new legalities? The book examines these problems by looking at materialities, the posthuman, and the relational in the (un)making of legalities. Themes and topics include postgenomic research, gene editing, neuroscience, epigenetics, precision medicine, regenerative medicine, reproductive technologies, border technologies, and theoretical debates in legal theory on the relationship between persons, property, and rights.
GDPR and Biobanking by Jane Reichel,Santa Slokenberga,Olga Tzortzatou,Springer Nature Pdf
Part I Setting the scene -- Introduction: Individual rights, the public interest and biobank research 4000 (8) -- Genetic data and privacy protection -- Part II GDPR and European responses -- Biobank governance and the impact of the GDPR on the regulation of biobank research -- Controller' and processor's responsibilities in biobank research under GDPR -- Individual rights in biobank research under GDPR -- Safeguards and derogations relating to processing for archiving purposes in the scientific purposes: Article 89 analysis for biobank research -- A Pan-European analysis of Article 89 implementation and national biobank research regulations -- EEA, Switzerland analysis of GDPR requirements and national biobank research regulations -- Part III National insights in biobank regulatory frameworks -- Selected 10-15 countries for reports: Germany -- Greece -- France -- Finland -- Sweden -- United Kingdom -- Part IV Conclusions -- Reflections on individual rights, the public interest and biobank research, ramifications and ways forward. .
The Immortal Life of Henrietta Lacks by Rebecca Skloot Pdf
#1 NEW YORK TIMES BESTSELLER • “The story of modern medicine and bioethics—and, indeed, race relations—is refracted beautifully, and movingly.”—Entertainment Weekly NOW A MAJOR MOTION PICTURE FROM HBO® STARRING OPRAH WINFREY AND ROSE BYRNE • ONE OF THE “MOST INFLUENTIAL” (CNN), “DEFINING” (LITHUB), AND “BEST” (THE PHILADELPHIA INQUIRER) BOOKS OF THE DECADE • ONE OF ESSENCE’S 50 MOST IMPACTFUL BLACK BOOKS OF THE PAST 50 YEARS • WINNER OF THE CHICAGO TRIBUNE HEARTLAND PRIZE FOR NONFICTION NAMED ONE OF THE BEST BOOKS OF THE YEAR BY The New York Times Book Review • Entertainment Weekly • O: The Oprah Magazine • NPR • Financial Times • New York • Independent (U.K.) • Times (U.K.) • Publishers Weekly • Library Journal • Kirkus Reviews • Booklist • Globe and Mail Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine: The first “immortal” human cells grown in culture, which are still alive today, though she has been dead for more than sixty years. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave. Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family—past and present—is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of. Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah. Deborah was consumed with questions: Had scientists cloned her mother? Had they killed her to harvest her cells? And if her mother was so important to medicine, why couldn’t her children afford health insurance? Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.
Andelka M. Phillips,Thana C. de Campos,Jonathan Herring
Author : Andelka M. Phillips,Thana C. de Campos,Jonathan Herring Publisher : Oxford University Press, USA Page : 353 pages File Size : 42,7 Mb Release : 2019-11-28 Category : Law ISBN : 9780198796558
Philosophical Foundations of Medical Law by Andelka M. Phillips,Thana C. de Campos,Jonathan Herring Pdf
With advances in personalised medicine, the field of medical law is being challenged and transformed. The nature of the doctor-patient relationship is shifting as patients simultaneously become consumers. The regulation of emerging technologies is being thrown into question, and we face new challenges in the context of global pandemics. This volume identifies significant questions and issues underlying the philosophy of medical law. It brings together leading philosophers, legal theorists, and medical specialists to discuss these questions in two parts. The first part deals with key foundational theories, and the second addresses a variety of topical issues, including euthanasia, abortion, and medical privacy. The wide range of perspectives and topics on offer provide a vital introduction to the philosophical underpinnings of medical law.
National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Population Health and Public Health Practice,Committee on Community-Based Solutions to Promote Health Equity in the United States
Author : National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Population Health and Public Health Practice,Committee on Community-Based Solutions to Promote Health Equity in the United States Publisher : National Academies Press Page : 583 pages File Size : 49,8 Mb Release : 2017-04-27 Category : Medical ISBN : 9780309452960
Communities in Action by National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Population Health and Public Health Practice,Committee on Community-Based Solutions to Promote Health Equity in the United States Pdf
In the United States, some populations suffer from far greater disparities in health than others. Those disparities are caused not only by fundamental differences in health status across segments of the population, but also because of inequities in factors that impact health status, so-called determinants of health. Only part of an individual's health status depends on his or her behavior and choice; community-wide problems like poverty, unemployment, poor education, inadequate housing, poor public transportation, interpersonal violence, and decaying neighborhoods also contribute to health inequities, as well as the historic and ongoing interplay of structures, policies, and norms that shape lives. When these factors are not optimal in a community, it does not mean they are intractable: such inequities can be mitigated by social policies that can shape health in powerful ways. Communities in Action: Pathways to Health Equity seeks to delineate the causes of and the solutions to health inequities in the United States. This report focuses on what communities can do to promote health equity, what actions are needed by the many and varied stakeholders that are part of communities or support them, as well as the root causes and structural barriers that need to be overcome.
Heather Widdows suggests new ethical frameworks for genetic governance, to replace those that offer little protection and permit significant injustice.
National Research Council,Division on Earth and Life Studies,Board on Life Sciences,Committee on A Framework for Developing a New Taxonomy of Disease
Author : National Research Council,Division on Earth and Life Studies,Board on Life Sciences,Committee on A Framework for Developing a New Taxonomy of Disease Publisher : National Academies Press Page : 142 pages File Size : 50,5 Mb Release : 2012-01-16 Category : Medical ISBN : 9780309222228
Toward Precision Medicine by National Research Council,Division on Earth and Life Studies,Board on Life Sciences,Committee on A Framework for Developing a New Taxonomy of Disease Pdf
Motivated by the explosion of molecular data on humans-particularly data associated with individual patients-and the sense that there are large, as-yet-untapped opportunities to use this data to improve health outcomes, Toward Precision Medicine explores the feasibility and need for "a new taxonomy of human disease based on molecular biology" and develops a potential framework for creating one. The book says that a new data network that integrates emerging research on the molecular makeup of diseases with clinical data on individual patients could drive the development of a more accurate classification of diseases and ultimately enhance diagnosis and treatment. The "new taxonomy" that emerges would define diseases by their underlying molecular causes and other factors in addition to their traditional physical signs and symptoms. The book adds that the new data network could also improve biomedical research by enabling scientists to access patients' information during treatment while still protecting their rights. This would allow the marriage of molecular research and clinical data at the point of care, as opposed to research information continuing to reside primarily in academia. Toward Precision Medicine notes that moving toward individualized medicine requires that researchers and health care providers have access to very large sets of health- and disease-related data linked to individual patients. These data are also critical for developing the information commons, the knowledge network of disease, and ultimately the new taxonomy.
Me Medicine vs. We Medicine by Donna Dickenson Pdf
Technologies such as direct-to-consumer genetic testing, pharmacogenetically developed therapies in cancer care, private umbilical cord blood banking, and neurocognitive enhancement claim to cater to an individual's specific biological character, and, in some cases, these technologies have shown powerful potential. Yet in others they have produced negligible or even negative results. Donna Dickenson examines the economic and political factors fueling the Me Medicine phenomenon and explores how, over time, this paradigm shift in how we approach our health might damage our individual and collective well-being. Drawing on the latest findings from leading scientists, social scientists, and political analysts, she critically examines four possible hypotheses driving the Me Medicine moment: a growing sense of threat; a wave of patient narcissism; corporate interests driving new niche markets; and the dominance of personal choice as a cultural value. She concludes with insights from political theory that emphasize a conception of the commons and the steps we can take to restore its value to modern biotechnology.