The Stored Tissue Issue: Biomedical Research, Ethics, and Law in the Era of Genomic MedicineOxford University Press, 2004. gada 20. maijs - 366 lappuses 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-honored commitments 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 of beneficial 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 inadequate informed 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 a richer understanding of partnership between patients and research participants and the biomedical research enterprise - a partnership for the benefit of all. |
Saturs
Current Laws Policies and Recommendations | 97 |
Ethical Professional and Legal Implications | 221 |
Index of Acronyms | 327 |
Index | 329 |
Citi izdevumi - Skatīt visu
The Stored Tissue Issue: Biomedical Research, Ethics, and Law in the Era of ... Robert F. Weir,Robert S. Olick Ierobežota priekšskatīšana - 2004 |
The Stored Tissue Issue: Biomedical Research, Ethics, and Law in the Era of ... Robert F. Weir,Robert S. Olick,Jeffrey C. Murray Ierobežota priekšskatīšana - 2004 |
Bieži izmantoti vārdi un frāzes
anonymized samples appropriate Bioethics biomedical investigators biomedical research blood samples body cancer cell lines cell research Chapter collected commercial committee concerns confidentiality consent documents consent form cryopreserved databases DeCODE diagnostic disclosed discussed disease DNA banking DNA samples DNA sequence donation embryos ethical and legal federal policy federal regulations gene genetic discrimination genetic information genetic privacy genetic testing geneticists genetics research genetics studies groups health insurance HIPAA hospital human biological materials Human Genome human participants human tissue research Ibid Iceland identified important individual informed consent informed consent process institutions interests issues laboratory labs molecular genetics Moore newborn screening NHANES obtained ownership pathologists pathology patients and research physicians possible post-diagnostic research presumed consent protections recommendations requirements Research Involving research practices research purposes research studies research with stored risks sample source scientists secondary research specific specimens storage stored samples stored tissue samples Yes Yes
Atsauces uz šo grāmatu
Institutional Review Board: Management and Function Elizabeth A. Bankert,Robert J. Amdur Ierobežota priekšskatīšana - 2006 |