The Stored Tissue Issue: Biomedical Research, Ethics, and Law in the Era of Genomic Medicine

Hardcover | May 18, 2004

byRobert F. Weir, Robert S. Olick, Jeffrey C. Murray

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Genetics research with stored human tissues provides many benefits and holds much promise. Yet how this critical research is conducted sometimes raises serious ethical, legal, and social concerns, and it is difficult to balance the promise of biomedical research with our time-honoredcommitments to individual choice in such fundamental matters as control over personal health information and the disposition of our bodily tissues. Weir and Olick provide a thorough analysis of this critical phase in the era of genomic medicine. While strongly supportive of the biomedical research enterprise, they develop a critique of many common research practices with banked tissues, DNA, and genetic data. Noting numerous examples ofbeneficial human tissue research, they focus on problematic research practices, controversial cases, and federal and institutional policies that limit the informed choices of patients and research participants. The authors offer a series of recommendations intended to limit the risks of inadequateinformed consent to research for individuals, families, and groups, and to strengthen the bonds of trust between the research enterprise and the public upon which biomedical progress depends. This book offers a wealth of information plus well-reasoned recommendations that will be of keen interest to geneticists, other biomedical scientists, research institutions, policymakers, students and others. It will serve as a clarion call to move beyond traditional policies and practices toward aricher understanding of partnership between patients and research participants and the biomedical research enterprise - a partnership for the benefit of all.

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Genetics research with stored human tissues provides many benefits and holds much promise. Yet how this critical research is conducted sometimes raises serious ethical, legal, and social concerns, and it is difficult to balance the promise of biomedical research with our time-honoredcommitments to individual choice in such fundamental ...

Robert F. Weir is at University of Iowa. Robert S. Olick is at SUNY Upstate Medical University.

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Format:HardcoverDimensions:366 pages, 6.3 × 9.21 × 1.18 inPublished:May 18, 2004Publisher:Oxford University PressLanguage:English

The following ISBNs are associated with this title:

ISBN - 10:0195123689

ISBN - 13:9780195123685

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Table of Contents

Part I: From Unquestioned Traditional Practices to a Controversy about Research, Rights, and Rewards1. Unprecedented Cases, Changes, and Challenges2. Concerns About Some Common Research Practices3. The Controversy over Stored Tissues, Research Practices, and Informed Consent4. Molecular Genetics: Tissue Samples in the LaboratoryPart II: Current Laws, Policies, and Recommendations5. Recommendations and Policies in Other Countries6. The Federal Regulations for Human Tissue Research: Summary and Assessment7. The Larger Legal Framework for Human Tissue Research: Moore and Beyond8. The National Bioethics Commission Report: Recommendations and LimitationsPart III: Ethical, Professional, and Legal Implications9. Updating Informed Consent in the Era of Genomic Medicine10. Beyond Informed Consent: Other Ethical Issues and Concerns11. An Agenda for the Near Future

Editorial Reviews

"The authors have made a huge contribution to the field of medical humanities in The Stored Tissue Issue. Pulling from real world examples, they delve into the many different types of research currently being performed."--Medical Humanities Review