The Ethics Of Medical Data Donation

Author : Jenny Krutzinna,Luciano Floridi
Publisher : Springer
Page : 198 pages
File Size : 52,5 Mb
Release : 2019-01-16
Category : Medical
ISBN : 9783030043636

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The Ethics of Medical Data Donation by Jenny Krutzinna,Luciano Floridi Pdf

This open access book presents an ethical approach to utilizing personal medical data. It features essays that combine academic argument with practical application of ethical principles. The contributors are experts in ethics and law. They address the challenges in the re-use of medical data of the deceased on a voluntary basis. This pioneering study looks at the many factors involved when individuals and organizations wish to share information for research, policy-making, and humanitarian purposes. Today, it is easy to donate blood or even organs, but it is virtually impossible to donate one’s own medical data. This is seen as ethically unacceptable. Yet, data donation can greatly benefit the welfare of our societies. This collection provides timely interdisciplinary research on biomedical big data. Topics include the ethics of data donation, the legal and regulatory challenges, and the current and future collaborations. Readers will learn about the ethical and regulatory challenges associated with medical data donations. They will also better understand the special nature of using deceased data for research purposes with regard to ethical principles of autonomy, beneficence, and justice. In addition, the contributors identify the key governance issues of such a scheme. The essays also look at what we can learn in terms of best practice from existing medical data schemes.

Author : Luciano Floridi,Jenny Krutzinna
Publisher : Unknown
Page : 198 pages
File Size : 51,5 Mb
Release : 2020-10-08
Category : Medical
ISBN : 1013273516

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The Ethics of Medical Data Donation by Luciano Floridi,Jenny Krutzinna Pdf

This open access book presents an ethical approach to utilizing personal medical data. It features essays that combine academic argument with practical application of ethical principles. The contributors are experts in ethics and law. They address the challenges in the re-use of medical data of the deceased on a voluntary basis. This pioneering study looks at the many factors involved when individuals and organizations wish to share information for research, policy-making, and humanitarian purposes. Today, it is easy to donate blood or even organs, but it is virtually impossible to donate one's own medical data. This is seen as ethically unacceptable. Yet, data donation can greatly benefit the welfare of our societies. This collection provides timely interdisciplinary research on biomedical big data. Topics include the ethics of data donation, the legal and regulatory challenges, and the current and future collaborations. Readers will learn about the ethical and regulatory challenges associated with medical data donations. They will also better understand the special nature of using deceased data for research purposes with regard to ethical principles of autonomy, beneficence, and justice. In addition, the contributors identify the key governance issues of such a scheme. The essays also look at what we can learn in terms of best practice from existing medical data schemes. This work was published by Saint Philip Street Press pursuant to a Creative Commons license permitting commercial use. All rights not granted by the work's license are retained by the author or authors.

Author : Chiara Mannelli
Publisher : Springer
Page : 188 pages
File Size : 49,8 Mb
Release : 2022-02-12
Category : Philosophy
ISBN : 3030672034

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The Ethics of Rapid Tissue Donation (RTD) by Chiara Mannelli Pdf

This book offers a reflection on the central role that the ethics of informed consent plays in Rapid Tissue Donation (RTD). RTD is an advanced oncology procedure that involves the procurement, for research purposes, of “fresh” tissues within two to six hours of a cancer patient’s death. Since RTD involves the retrieval of tissues after death, and since the collected tissues are of great importance for medical research, the need for any form of informed consent to regulate this procedure has been questioned. This book argues for the necessity of informed consent to govern RTD, and it provides the reader with a bespoke informed consent process applicable to cancer patients. The analysis unfolds at the intersection between applied ethics, public health ethics, and clinical ethics, and it is informed by philosophical theories of informed consent and by the social implications of individual choices. By viewing medical issues relating to informed consent in oncology from an ethical perspective, the book combines philosophical analysis with discussion of concrete cancer-related issues. As a result, the book is suitable for readers interested in ethical reasoning as well as for those with a medical background. It contributes to contemporary research by offering an original analysis that relies on a rigorous philosophical approach to address innovative issues at the cutting edge of medical research and policy making.

Author : Institute of Medicine,Committee on Implications of For-Profit Enterprise in Health Care
Publisher : National Academies Press
Page : 580 pages
File Size : 53,9 Mb
Release : 1986-01-01
Category : Medical
ISBN : 9780309036436

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For-Profit Enterprise in Health Care by Institute of Medicine,Committee on Implications of For-Profit Enterprise in Health Care Pdf

"[This book is] the most authoritative assessment of the advantages and disadvantages of recent trends toward the commercialization of health care," says Robert Pear of The New York Times. This major study by the Institute of Medicine examines virtually all aspects of for-profit health care in the United States, including the quality and availability of health care, the cost of medical care, access to financial capital, implications for education and research, and the fiduciary role of the physician. In addition to the report, the book contains 15 papers by experts in the field of for-profit health care covering a broad range of topicsâ€"from trends in the growth of major investor-owned hospital companies to the ethical issues in for-profit health care. "The report makes a lasting contribution to the health policy literature." â€"Journal of Health Politics, Policy and Law.

Author : World Health Organization
Publisher : Unknown
Page : 114 pages
File Size : 49,6 Mb
Release : 2016-06-24
Category : Medical
ISBN : 924154855X

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Blood Donor Counselling by World Health Organization Pdf

Individuals who donate their blood provide a unique and precious gift in an act of human solidarity. In order to donate blood, prospective donors should be in good health and free from any infections that can be transmitted through transfusion. Most blood donors perceive themselves to be healthy, but some are unsuitable to donate blood due to the potential risk of compromising or worsening their own health or the risk of transmission of infections to patients. Blood transfusion services (BTS) have a duty of care towards blood donors as well as to the recipients of transfusion. This duty of care extends to prospective donors who are deferred from donation--whether on a temporary or permanent basis--as well as those who donate blood and are subsequently found to have unusual or abnormal test results. BTS have a responsibility to confirm test results and provide information, counseling and support to enable these individuals to understand and respond to unexpected information about their health or risk status. Counseling is part of the spectrum of care that a BTS should be able to provide to blood donors--including referral to medical practitioners or specialist clinical services. Pre-donation counseling was recognized as one element of the strategy to reduce and, if possible, prevent the donation of blood by individuals who might be at risk for HIV and other TTI including hepatitis B and C viruses as well as to inform the donor of the donation process and testing of blood for HIV. Post-donation counseling was acknowledged to be a necessary element of donor management as an adjunct to informing donors of unusual or abnormal test results. Blood donor counseling by trained specialist staff is now considered to be a key component of the blood system in most countries with a well-developed blood transfusion service. It may be required at a number of stages in the blood donation process or following blood screening and should be available at any point at which the BTS has an interface with donors. In many countries, however, blood donor counseling is not yet available in a structured way. Blood Donor Counselling: Implementation Guidelines has therefore been developed to provide guidance to blood transfusion services that have not yet established donor counseling programs.

Author : Institute of Medicine,Board on Health Sciences Policy,Committee on Increasing Rates of Organ Donation
Publisher : National Academies Press
Page : 358 pages
File Size : 54,9 Mb
Release : 2006-08-24
Category : Medical
ISBN : 9780309164641

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Organ Donation by Institute of Medicine,Board on Health Sciences Policy,Committee on Increasing Rates of Organ Donation Pdf

Rates of organ donation lag far behind the increasing need. At the start of 2006, more than 90,000 people were waiting to receive a solid organ (kidney, liver, lung, pancreas, heart, or intestine). Organ Donation examines a wide range of proposals to increase organ donation, including policies that presume consent for donation as well as the use of financial incentives such as direct payments, coverage of funeral expenses, and charitable contributions. This book urges federal agencies, nonprofit groups, and others to boost opportunities for people to record their decisions to donate, strengthen efforts to educate the public about the benefits of organ donation, and continue to improve donation systems. Organ Donation also supports initiatives to increase donations from people whose deaths are the result of irreversible cardiac failure. This book emphasizes that all members of society have a stake in an adequate supply of organs for patients in need, because each individual is a potential recipient as well as a potential donor.

Author : Collectif
Publisher : Éditions de la Maison des sciences de l’homme
Page : 432 pages
File Size : 49,8 Mb
Release : 2017-12-19
Category : Social Science
ISBN : 9782735122851

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New Cannibal Markets by Collectif Pdf

Thanks to recent progress in biotechnology, surrogacy, transplantation of organs and tissues, blood products or stem-cell and gamete banks are now widely used throughout the world. These techniques improve the health and well-being of some human beings using products or functions that come from the body of others. Growth in demand and absence of an appropriate international legal framework have led to the development of a lucrative global trade in which victims are often people living in insecure conditions who have no other ways to survive than to rent or sell part of their body. This growing market, in which parts of the human body are bought and sold with little respect for the human person, displays a kind of dehumanization that looks like a new form of slavery. This book is the result of a collective and multidisciplinary reflection organized by a group of international researchers working in the field of medicine and social sciences. It helps better understand how the emergence of new health industries may contribute to the development of a global medical tourism. It opens new avenues for reflection on technologies that are based on appropriation of parts of the body of others for health purposes, a type of practice that can be metaphorically compared to cannibalism. Are these the fi rst steps towards a proletariat of men- and women-objects considered as a reservoir of products of human origin needed to improve the health or well-being of the better-off? The book raises the issue of the uncontrolled use of medical advances that can sometimes reach the anticipations of dystopian literature and science fiction.

Author : Nicolaus Kröger,Mohamad Mohty,Carlo Dufour
Publisher : Unknown
Page : 688 pages
File Size : 51,8 Mb
Release : 2020-10-08
Category : Medical
ISBN : 1013273672

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The EBMT Handbook by Nicolaus Kröger,Mohamad Mohty,Carlo Dufour Pdf

This Open Access edition of the European Society for Blood and Marrow Transplantation (EBMT) handbook addresses the latest developments and innovations in hematopoietic stem cell transplantation and cellular therapy. Consisting of 93 chapters, it has been written by 175 leading experts in the field. Discussing all types of stem cell and bone marrow transplantation, including haplo-identical stem cell and cord blood transplantation, it also covers the indications for transplantation, the management of early and late complications as well as the new and rapidly evolving field of cellular therapies. This book provides an unparalleled description of current practices to enhance readers' knowledge and practice skills. This work was published by Saint Philip Street Press pursuant to a Creative Commons license permitting commercial use. All rights not granted by the work's license are retained by the author or authors.

Author : Sorin Hostiuc
Publisher : Academic Press
Page : 431 pages
File Size : 41,5 Mb
Release : 2018-08-07
Category : Medical
ISBN : 9780128137659

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Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies by Sorin Hostiuc Pdf

Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies offers thorough discussions on preconception carrier screening, genetic engineering and the use of CRISPR gene editing, mitochondrial gene replacement therapy, sex selection, predictive testing, secondary findings, embryo reduction and the moral status of the embryo, genetic enhancement, and the sharing of genetic data. Chapter contributions from leading bioethicists and clinicians encourage a global, holistic perspective on applied challenges and the moral questions relating the implementation of genetic reproductive technology. The book is an ideal resource for practitioners, regulators, lawmakers, clinical researchers, genetic counselors and graduate and medical students. As the Human Genome Project has triggered a technological revolution that has influenced nearly every field of medicine, including reproductive medicine, obstetrics, gynecology, andrology, prenatal genetic testing, and gene therapy, this book presents a timely resource. Provides practical analysis of the ethical issues raised by cutting-edge techniques and recent advances in prenatal and reproductive genetics Contains contributions from leading bioethicists and clinicians who offer a global, holistic perspective on applied challenges and moral questions relating to genetic and genomic reproductive technology Discusses preconception carrier screening, genetic engineering and the use of CRISPR gene editing, mitochondrial gene replacement therapy, ethical issues, and more

Author : Angela Daly,Monique Mann,S. Kate Devitt
Publisher : Lulu.com
Page : 372 pages
File Size : 47,5 Mb
Release : 2019-01-23
Category : Data protection
ISBN : 9789492302281

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Good Data by Angela Daly,Monique Mann,S. Kate Devitt Pdf

Moving away from the strong body of critique of pervasive ?bad data? practices by both governments and private actors in the globalized digital economy, this book aims to paint an alternative, more optimistic but still pragmatic picture of the datafied future. The authors examine and propose ?good data? practices, values and principles from an interdisciplinary, international perspective. From ideas of data sovereignty and justice, to manifestos for change and calls for activism, this collection opens a multifaceted conversation on the kinds of futures we want to see, and presents concrete steps on how we can start realizing good data in practice.

Author : United States. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research
Publisher : Unknown
Page : 614 pages
File Size : 43,6 Mb
Release : 1978
Category : Human experimentation in medicine
ISBN : UCSD:31822000897728

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The Belmont Report by United States. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research Pdf

Author : Wesley J. Smith
Publisher : ReadHowYouWant.com
Page : 474 pages
File Size : 43,5 Mb
Release : 2010-10-06
Category : Medical
ISBN : 9781458778413

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The Culture of Death: The Assault on Medical Ethics in America (Large Print 16pt) by Wesley J. Smith Pdf

When his teenaged son Christopher, brain-damaged in an auto accident, developed a 106-degree fever following weeks of unconsciousness, John Campbell asked the attending physician for help. The doctor refused. Why bother? The boy's life was effectively over. Campbell refused to accept this verdict. He demanded treatment and threatened legal action. The doctor finally relented. With treatment, Christopher's temperature subsided almost immediately. Soon afterwards he regained consciousness and today he is learning to walk again. This story is one of many Wesley Smith recounts in his groundbreaking new book, The Culture of Death. Smith believes that American medicine ''is changing from a system based on the sanctity of human life into a starkly utilitarian model in which the medically defenseless are seen as having not just a 'right' but a 'duty' to die.'' Going behind the current scenes of our health care system, he shows how doctors withdraw desired care based on Futile Care Theory rather than provide it as required by the Hippocratic Oath. And how ''bioethicists'' influence policy by considering questions such as whether organs may be harvested from the terminally ill and disabled. This is a passionate, yet coolly reasoned book about the current crisis in medical ethics by an author who has made ''the new thanatology'' his consuming interest.

Author : Rebecca Skloot
Publisher : Crown
Page : 386 pages
File Size : 45,9 Mb
Release : 2010-02-02
Category : Science
ISBN : 9780307589385

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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.

Author : Institute of Medicine,Board on Health Sciences Policy,Committee on Establishing a National Cord Blood Stem Cell Bank Program
Publisher : National Academies Press
Page : 335 pages
File Size : 41,6 Mb
Release : 2005-11-26
Category : Medical
ISBN : 9780309095860

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Cord Blood by Institute of Medicine,Board on Health Sciences Policy,Committee on Establishing a National Cord Blood Stem Cell Bank Program Pdf

With the potential for self-renewal and differentiation, the possibilities for stem cells are enormous. One specific type of stem cell, the hematopoietic progenitor cell (HPC), which is derived from umbilical cord blood (as well as adult bone marrow and mobilized peripheral blood), holds particular promise. To make the most of these HPCs, the Institute of Medicine was asked to consider the optimal structure for a national cord blood program and to address pertinent issues related to maximizing the potential of stem cell technology. Cord Blood: Establishing a National Hematopoietic Stem Cell Bank Program examines: The role of cord blood in stem cell transplantation The current status of blood banks already in existence The optimal structure for the cord blood program The current use and utility of cord blood for stem cell transplants The best way to advance the use of cord blood units and make them available for research Expert advice from leaders in the fields of economics, public health, medicine, and biostatistics combine to make this very timely and topical book useful to a number of stakeholders.

Author : Andreas Holzinger,Randy Goebel,Michael Mengel,Heimo Müller
Publisher : Springer Nature
Page : 351 pages
File Size : 54,9 Mb
Release : 2020-06-24
Category : Computers
ISBN : 9783030504021

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Artificial Intelligence and Machine Learning for Digital Pathology by Andreas Holzinger,Randy Goebel,Michael Mengel,Heimo Müller Pdf

Data driven Artificial Intelligence (AI) and Machine Learning (ML) in digital pathology, radiology, and dermatology is very promising. In specific cases, for example, Deep Learning (DL), even exceeding human performance. However, in the context of medicine it is important for a human expert to verify the outcome. Consequently, there is a need for transparency and re-traceability of state-of-the-art solutions to make them usable for ethical responsible medical decision support. Moreover, big data is required for training, covering a wide spectrum of a variety of human diseases in different organ systems. These data sets must meet top-quality and regulatory criteria and must be well annotated for ML at patient-, sample-, and image-level. Here biobanks play a central and future role in providing large collections of high-quality, well-annotated samples and data. The main challenges are finding biobanks containing ‘‘fit-for-purpose’’ samples, providing quality related meta-data, gaining access to standardized medical data and annotations, and mass scanning of whole slides including efficient data management solutions.