The Legal Implications of Human Tissue Research
Author | : Chung-Lin Chen |
Publisher | : |
Total Pages | : 426 |
Release | : 2007 |
Genre | : Biotechnology industries |
ISBN | : |
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Author | : Chung-Lin Chen |
Publisher | : |
Total Pages | : 426 |
Release | : 2007 |
Genre | : Biotechnology industries |
ISBN | : |
Author | : Nils Hoppe |
Publisher | : Universitätsverlag Göttingen |
Total Pages | : 183 |
Release | : 2011 |
Genre | : Medical |
ISBN | : 3863950313 |
"Human tissue and biobank research is of increasing importance for understanding the causes of widespread diseases and developing effective therapies. However, while the success of biobank research depends on the availability of a large number of samples and the consolidation of collections across country borders is very desirable from the perspective of researchers, the legal and ethical requirements for the procurement, storage and use of human tissue samples are rather heterogeneous across different countries. Moreover, the lack of comprehensive supranational regulation on human tissue and biobanking can be seen as posing a serious threat to transnational biomedical research. Against this background, it was one of the aims of the EU-funded Tiss.EU project ('Evaluation of Legislation and Related Guidelines on the Procurement, Storage and Transfer of Human Tissues and Cells in the European Union--an Evidence-Based Impact Analysis') to analyse the ethical and legal regulation of human tissue and biobank research across the 27 European Member States plus Switzerland. The results of nine international workshops and three conferences are gathered in this volume. While the country reports evaluate the implementation of ethical and legal guidelines at a national level, point out their strengths and deficits, and, where required, create an evidence base for the revision of said legislation, the conference reports address more general ethical and legal issues in this field. The volume is completed by a final presentation of project's results"--Publisher's description
Author | : Rebecca Skloot |
Publisher | : Crown |
Total Pages | : 386 |
Release | : 2010-02-02 |
Genre | : Science |
ISBN | : 0307589382 |
#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 | : Christian Lenk |
Publisher | : Oxford University Press, USA |
Total Pages | : 217 |
Release | : 2011-01-27 |
Genre | : Medical |
ISBN | : 0199587558 |
The use of human tissue for medical research and scientific progress raises many ethical and legal challenges. This multi-authored interdisciplinary text provides a fascinating insight into interlinking research perspectives and serves as a comprehensive reference to the state of play ethically and legally in Europe.
Author | : Robert F. Weir |
Publisher | : |
Total Pages | : 0 |
Release | : 1998 |
Genre | : Bioethics |
ISBN | : 9780877456353 |
Focusing on the debate over informed consent versus the needs of researchers, the first essays analyze the implications of stored tissue samples in clinical settings (for example, obstetrics and pediatrics) and research settings such as the international Human Genome Diversity Project. Next, professionals in medical history, medicine and biomedical research, philosophy, biomedical ethics, and law provide multidisciplinary perspectives. Additional essays discuss special issues in the use of stored tissue samples in forensic and military settings; two of these are written by professionals who helped establish the DNA registries at the FBI and the Department of Defense.
Author | : National Research Council |
Publisher | : National Academies Press |
Total Pages | : 388 |
Release | : 2001-01-19 |
Genre | : Social Science |
ISBN | : 0309171431 |
What can social science, and demography in particular, reasonably expect to learn from biological information? There is increasing pressure for multipurpose household surveys to collect biological data along with the more familiar interviewer-respondent information. Given that recent technical developments have made it more feasible to collect biological information in non-clinical settings, those who fund, design, and analyze survey data need to think through the rationale and potential consequences. This is a concern that transcends national boundaries. Cells and Surveys addresses issues such as which biologic/genetic data should be collected in order to be most useful to a range of social scientists and whether amassing biological data has unintended side effects. The book also takes a look at the various ethical and legal concerns that such data collection entails.
Author | : Institute of Medicine |
Publisher | : National Academies Press |
Total Pages | : 353 |
Release | : 1994-01-01 |
Genre | : Medical |
ISBN | : 0309047986 |
Raising hopes for disease treatment and prevention, but also the specter of discrimination and "designer genes," genetic testing is potentially one of the most socially explosive developments of our time. This book presents a current assessment of this rapidly evolving field, offering principles for actions and research and recommendations on key issues in genetic testing and screening. Advantages of early genetic knowledge are balanced with issues associated with such knowledge: availability of treatment, privacy and discrimination, personal decision-making, public health objectives, cost, and more. Among the important issues covered: Quality control in genetic testing. Appropriate roles for public agencies, private health practitioners, and laboratories. Value-neutral education and counseling for persons considering testing. Use of test results in insurance, employment, and other settings.
Author | : Robert F. Weir |
Publisher | : Oxford University Press |
Total Pages | : 358 |
Release | : 2004-05-20 |
Genre | : Medical |
ISBN | : 0195123689 |
This book provides a thorough, well-balanced analysis of common research practices with banked tissues, DNA, and genetic data. Describing many examples of beneficial tissue research, the authors focus on problematic research practices, controversial cases, and federal and institutional policies that limit the informed choices of patients and research participants. They offer a series of recommendations to help overcome these problems.
Author | : Marshall B. Kapp |
Publisher | : |
Total Pages | : 6 |
Release | : 2014 |
Genre | : |
ISBN | : |
The conduct of biomedical research involving the participation of human beings implicates a variety of ethical concerns pertaining to such values as dignity, bodily integrity, autonomy, and privacy. These ethical concerns have been translated into a complex regulatory apparatus in the USA, containing specific legal provisions concerning such matters as participant safety, informed consent, and confidentiality. A topic of particular interest for pathologists is the handling of human tissue specimens that may be used for present, or stored for future, research purposes. This article examines the ethical and legal ramifications of obtaining and storing tissue samples for research purposes, with special attention to the issues of informed consent and confidentiality.
Author | : Christian Lenk |
Publisher | : Springer Science & Business Media |
Total Pages | : 240 |
Release | : 2011-07-30 |
Genre | : Medical |
ISBN | : 9400716737 |
The research field of biobanks and tissue research is highly promising. Many projects around the globe are involved in the collection of human tissue and health data for research purposes. These initiatives are driven by the perspective of decisive breakthroughs in the knowledge of the genetic pathways involved in widespread diseases. However, there are considerable ethical and legal challenges to be considered as well. These challenges encompass the use of body material for research purposes, the misuse of genetic and other health data by third parties, trust in science and medicine, concerns regarding privacy, use of genetic data for forensic applications by the state and the police, and regulatory issues. This volume is divided into three parts: the inclusion of the public, the rights of donors and patients, examples and recommendations for the future of tissue research. It presents a comprehensive overview of the most important topics in the field by renowned scholars in medical ethics and biolaw.