The Ethics of Medical Data Donation

The Ethics of Medical Data Donation
Author: Jenny Krutzinna
Publisher: Springer
Total Pages: 198
Release: 2019-01-16
Genre: Medical
ISBN: 3030043630

Download The Ethics of Medical Data Donation Book in PDF, Epub and Kindle

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.

The Ethics of Medical Data Donation

The Ethics of Medical Data Donation
Author: Luciano Floridi
Publisher:
Total Pages: 198
Release: 2020-10-08
Genre: Medical
ISBN: 9781013273513

Download The Ethics of Medical Data Donation Book in PDF, Epub and Kindle

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.

Blood Donor Counselling

Blood Donor Counselling
Author: World Health Organization
Publisher:
Total Pages: 114
Release: 2016-06-24
Genre: Medical
ISBN: 9789241548557

Download Blood Donor Counselling Book in PDF, Epub and Kindle

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.

Organ Donation

Organ Donation
Author: Institute of Medicine
Publisher: National Academies Press
Total Pages: 358
Release: 2006-08-24
Genre: Medical
ISBN: 0309164648

Download Organ Donation Book in PDF, Epub and Kindle

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.

For-Profit Enterprise in Health Care

For-Profit Enterprise in Health Care
Author: Institute of Medicine
Publisher: National Academies Press
Total Pages: 580
Release: 1986-01-01
Genre: Medical
ISBN: 0309036437

Download For-Profit Enterprise in Health Care Book in PDF, Epub and Kindle

"[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.

The Immortal Life of Henrietta Lacks

The Immortal Life of Henrietta Lacks
Author: Rebecca Skloot
Publisher: Crown
Total Pages: 386
Release: 2010-02-02
Genre: Science
ISBN: 0307589382

Download The Immortal Life of Henrietta Lacks Book in PDF, Epub and Kindle

#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.

Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies

Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies
Author: Sorin Hostiuc
Publisher: Academic Press
Total Pages: 431
Release: 2018-08-07
Genre: Medical
ISBN: 0128137657

Download Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies Book in PDF, Epub and Kindle

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

The Culture of Death: The Assault on Medical Ethics in America (Large Print 16pt)

The Culture of Death: The Assault on Medical Ethics in America (Large Print 16pt)
Author: Wesley J. Smith
Publisher: ReadHowYouWant.com
Total Pages: 474
Release: 2010-10-06
Genre: Medical
ISBN: 145877841X

Download The Culture of Death: The Assault on Medical Ethics in America (Large Print 16pt) Book in PDF, Epub and Kindle

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.

Conceiving People

Conceiving People
Author: Daniel Groll
Publisher: Oxford University Press
Total Pages: 257
Release: 2021-08-24
Genre: Philosophy
ISBN: 0190063076

Download Conceiving People Book in PDF, Epub and Kindle

This is an open access title available under the terms of a CC BY-NC-ND 4.0 International license. It is free to read at Oxford Scholarship Online and offered as a free PDF download from OUP and selected open access locations. Each year, tens of thousands of children are conceived with donated gametes (sperm or eggs). By some estimates, there are over one million donor-conceived people in the United States and, of course, many more the world over. Some know they are donor-conceived. Some do not. Some know the identity of their donors. Others never will. Questions about what donor-conceived people should know about their genetic progenitors are hugely significant for literally millions of people, including donor-conceived people, their parents, and donors. But the practice of gamete donation also provides a vivid occasion for thinking about questions that matter to everyone. What is the value of knowing who your genetic progenitors are? How are our identities bound up with knowing where we come from? What obligations do parents have to their children? And what makes someone a parent in the first place? In Conceiving People: Identity, Genetics and Gamete Donation, Daniel Groll argues that people who plan to create a child with donated gametes should choose a donor whose identity will be made available to the resulting child. This is not, Groll argues, because having genetic knowledge is fundamentally important. Rather, it is because donor-conceived people are likely to develop a significant interest in having genetic knowledge and parents must help satisfy their children's significant interests. In other words, because a donor-conceived person is likely to care about having genetic knowledge, their parents should care too.

The Belmont Report

The Belmont Report
Author: United States. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research
Publisher:
Total Pages: 614
Release: 1978
Genre: Ethics, Medical
ISBN:

Download The Belmont Report Book in PDF, Epub and Kindle