A proposal for resolving tensions between professionals and society regarding tissue for transplants and research, while properly protecting donors' interests.

#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.

"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

At present, the international community cannot be assured that the quality and, in particular the safety of tissues for transplants, is properly guaranteed in all countries and regions. Shortcomings of international and regional ethical rules and standards in the field of tissue banking, the lack of national ethical rules and standards in force in several countries, the lack of proper regulatory oversight and overall lack of harmonisation of existing ethical rules and standards, contribute to the problem.This book addresses the issues by promoting the adoption of an ethical policy and the use of a model code of ethics and a model code of practice as a reference for the tissue banking community, government agencies and policy-makers worldwide. This will facilitate the use of tissue processed in one country in any other country that needs it with the additional assurance of quality and safety that is lacking presently.

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.

Deficiencies and shortfalls in the supply of human organs for transplantation and human tissue for research generate policy dilemmas across the world and have often given rise to major and deleterious controversies, such as those relating to organ and tissue retention practices following post-mortem examination. They also create an environment in which illegitimate commercial activities flourish. At the same time, patients are denied the therapy they desperately require and researchers are impeded from carrying out vital work into the causes of, and efficacious treatments for, major illnesses and diseases. David Price sets out a clear and integrated legal and policy framework which emanates from the tissue source but protects the interests of donors and relevant professionals through tailored property entitlements, but without presupposing rights to trade in 'original' materials.

As the use of human body parts has become increasingly commercialized, a need has arisen for new approaches to regulation that moves beyond the paradigm of altruism. During the course of this discussion, the notion of property has become a key concept. Focusing on practical and conceptual perspectives, the multidisciplinary group of authors, which includes specialists in philosophy, law, sociology, biology and medicine, have come together with practicing lawyers to consider both legal provisions and patterns of regulation in countries across Europe. Identifying divergences between different legal traditions, the authors explore various conceptual models which could be used to improve and to guide policy making. With this twin focus on practical and conceptual perspectives, this volume sets the standard for a detailed and innovative discussion of issues surrounding the regulation of research on human tissue.