The stored tissue issue: biomedical research, ethics, and law in the era of genomic medicine
Gespeichert in:
| Hauptverfasser: | , |
|---|---|
| Format: | Buch |
| Sprache: | English |
| Veröffentlicht: |
Oxford [u.a.]
Oxford Univ. Press
2004
|
| Schlagworte: | |
| Online-Zugang: | Inhaltsverzeichnis |
| Beschreibung: | Includes bibliographical references and index |
| Beschreibung: | XVII, 339 S. |
| ISBN: | 0195123689 9780195123685 |
Internformat
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| 245 | 1 | 0 | |a The stored tissue issue |b biomedical research, ethics, and law in the era of genomic medicine |c Robert F. Weir ; Robert S. Olick ; with Jeffrey C. Murray |
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| 650 | 4 | |a Ethics, Medical | |
| 650 | 4 | |a Organ Preservation | |
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Datensatz im Suchindex
| _version_ | 1804132806157139968 |
|---|---|
| adam_text | Contents
Part I From Unquestioned Traditional Practices to a
Controversy About Research, Rights, and Rewards
1. Unprecedented Cases, Debatable Changes, and New Challenges, 3
The John Moore Case, 5
The NHANES III Study, 6
DeCODE Genetics, 10
The Challenges Presented in Writing This Book, 16
Cases and Vignettes, 18
2. Concerns About Some Common Research Practices, 22
The Available Data About Tissues in Storage, 23
Segments of Public Opinion, 26
Genetic Privacy and Genetic Discrimination, 31
Relevant Concerns of Scientists, 36
Other Ethical and Legal Concerns, 37
On Terminology, 37
Cases and Vignettes, 41
3. The Controversy over Stored Tissues, Research Practices,
and Informed Consent, 45
Questions in the Ongoing Controversy, 47
xv
xvi CONTENTS
Precursors to the NIH/CDC Workshop Statement, 50
The NIH/CDC Workshop Statement, 52
Critical Responses to the NIH/CDC Workshop Statement, 54
Alternative Solutions, 58
Cases and Vignettes, 64
4. Molecular Genetics: Tissue Samples in the Laboratory, 68
Biological Sampling Methods, 69
Tissue Types, 71
Other Types of Tissues, 75
Sample Storage and Processing, 79
Types of Information, 80
Anonymized Samples, 82
New Technologies for DNA Testing, 83
DNA Sequence Storage, 84
The Impact of Molecular Genetics on Scientific Research, 86
From the HGP to Genomic Medicine and Public Health, 89
Scenario: Chapters in the Life of a Tissue Sample, 92
Cases and Vignettes, 94
Part II Current Laws, Policies, and Recommendations
5. Recommendations and Policies in Other Countries, 99
The Health Council of the Netherlands (1994), 100
The Nuffield Council on Bioethics (1995), 105
The Human Genome Organization (1996, 1998), 110
The Council of Europe (1997, 1999), 113
The Canadian Tri Council Policy Statement (1998, 2001), 115
Summary, 120
Cases and Vignettes, 124
6. The Federal Regulations for Human Tissue Research: Summary
and Assessment, 128
A Summary of the Common Rule, 129
Informed Consent: The Basic Framework, 135
Exemption, Waiver, and Expedited Review, 138
Privacy and Confidentiality, 139
Research with Stored Tissue Samples Under the Federal Policy, 140
The HIPAA Privacy Standards, 146
State Regulation of Research, 148
Cases and Vignettes, 149
1. The Larger Legal Framework for Human Tissue Research:
Moore and Beyond, 155
John Moore s Spleen, 156
I
CONTENTS xvjj
Ownership and Control of the Body and Its Parts, 165
Gene Patenting, 176
Privacy of Genetic and Other Health Information, 179
Genetic Discrimination: Health Insurance, 184
Genetic Discrimination: Genes in the Workplace, 186
Cases and Vignettes, 191
8. The NBAC Report: Recommendations and Limitations, 201
NBAC s Mandate and Goals, 202
The NBAC Analysis and Recommendations, 205
Assessment, 212
The NBAC Report in an International Context, 217
Cases and Vignettes, 218
Part III Ethical, Professional, and Legal Implications
9. Updating Informed Consent in the Era of Genomic Medicine, 223
The Need to Update the Informed Consent Process, 224
The Reasonable Person Standard of Disclosure, 239
Varieties of Consent, 247
Cases and Vignettes, 264
10. Beyond Informed Consent: Other Ethical Issues and Concerns, 270
The Relevance of Ethical Principles to the Debate, 271
Some Special Issues Involving Research Without Adequate Consent, 273
The Risks of Other Kinds of Psychosocial Harm, 284
The Ownership of Body Parts, 286
Concerns About Commercialism, 288
Research Using Databases, 293
Some Special Issues in Forensic Settings, 296
Cases and Vignettes, 299
11. An Agenda for the Near Future, 306
Recommendations, 308
Recommendations for Individuals and Families, 308
Recommendations for Physician Investigators and Other Biomedical
Investigators, 314
Recommendations for Administrators of Research Institutions, 319
Recommendations for Makers of Public Policy Related to Human
Participants Research, 323
Appendix: Index of Acronyms, 327
Index, 329
|
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| indexdate | 2024-07-09T19:58:40Z |
| institution | BVB |
| isbn | 0195123689 9780195123685 |
| language | English |
| lccn | 2003190051 |
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| spelling | Weir, Robert F. Verfasser aut The stored tissue issue biomedical research, ethics, and law in the era of genomic medicine Robert F. Weir ; Robert S. Olick ; with Jeffrey C. Murray Oxford [u.a.] Oxford Univ. Press 2004 XVII, 339 S. txt rdacontent n rdamedia nc rdacarrier Includes bibliographical references and index Ethik Ethics, Medical Organ Preservation Preservation of organs, tissues, etc. Moral and ethical aspects Ethik (DE-588)4015602-3 gnd rswk-swf Gewebebank (DE-588)4333665-6 gnd rswk-swf Recht (DE-588)4048737-4 gnd rswk-swf Gewebebank (DE-588)4333665-6 s Ethik (DE-588)4015602-3 s DE-604 Recht (DE-588)4048737-4 s b DE-604 Olick, Robert S. Verfasser aut HBZ Datenaustausch application/pdf http://bvbr.bib-bvb.de:8991/F?func=service&doc_library=BVB01&local_base=BVB01&doc_number=012831874&sequence=000002&line_number=0001&func_code=DB_RECORDS&service_type=MEDIA Inhaltsverzeichnis |
| spellingShingle | Weir, Robert F. Olick, Robert S. The stored tissue issue biomedical research, ethics, and law in the era of genomic medicine Ethik Ethics, Medical Organ Preservation Preservation of organs, tissues, etc. Moral and ethical aspects Ethik (DE-588)4015602-3 gnd Gewebebank (DE-588)4333665-6 gnd Recht (DE-588)4048737-4 gnd |
| subject_GND | (DE-588)4015602-3 (DE-588)4333665-6 (DE-588)4048737-4 |
| title | The stored tissue issue biomedical research, ethics, and law in the era of genomic medicine |
| title_auth | The stored tissue issue biomedical research, ethics, and law in the era of genomic medicine |
| title_exact_search | The stored tissue issue biomedical research, ethics, and law in the era of genomic medicine |
| title_full | The stored tissue issue biomedical research, ethics, and law in the era of genomic medicine Robert F. Weir ; Robert S. Olick ; with Jeffrey C. Murray |
| title_fullStr | The stored tissue issue biomedical research, ethics, and law in the era of genomic medicine Robert F. Weir ; Robert S. Olick ; with Jeffrey C. Murray |
| title_full_unstemmed | The stored tissue issue biomedical research, ethics, and law in the era of genomic medicine Robert F. Weir ; Robert S. Olick ; with Jeffrey C. Murray |
| title_short | The stored tissue issue |
| title_sort | the stored tissue issue biomedical research ethics and law in the era of genomic medicine |
| title_sub | biomedical research, ethics, and law in the era of genomic medicine |
| topic | Ethik Ethics, Medical Organ Preservation Preservation of organs, tissues, etc. Moral and ethical aspects Ethik (DE-588)4015602-3 gnd Gewebebank (DE-588)4333665-6 gnd Recht (DE-588)4048737-4 gnd |
| topic_facet | Ethik Ethics, Medical Organ Preservation Preservation of organs, tissues, etc. Moral and ethical aspects Gewebebank Recht |
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