Specimen science: ethics and policy implications
Gespeichert in:
| Hauptverfasser: | , |
|---|---|
| Weitere Verfasser: | , |
| Format: | Buch |
| Sprache: | English |
| Veröffentlicht: |
Cambridge, Massachusetts ; London, England
The MIT Press
[2017]
|
| Schriftenreihe: | Basic bioethics
|
| Schlagworte: | |
| Online-Zugang: | Inhaltsverzeichnis |
| Beschreibung: | Literaturangaben "This volume was based on a publiuc conference held et Harvard Law School in November 2015, ..." - Acknowledgements |
| Beschreibung: | ix, 422 Seiten Diagramme 24 cm |
| ISBN: | 9780262036108 |
Internformat
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| 245 | 1 | 0 | |a Specimen science |b ethics and policy implications |c edited by Holly Fernandez Lynch, Barbara E. Bierer, I. Glenn Cohen, and Suzanne M. Rivera |
| 264 | 1 | |a Cambridge, Massachusetts ; London, England |b The MIT Press |c [2017] | |
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| 700 | 1 | |a Rivera, Suzanne M. |d 1969- |0 (DE-588)1148292527 |4 edt |4 aut | |
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Datensatz im Suchindex
| _version_ | 1811034790177013760 |
|---|---|
| adam_text |
Contents
Series Foreword xi
Acknowledgments xiii
Introduction 1
Suzanne M. Rivera, Barbara E. Bierer, 1. Glenn Cohen, and
Holly Fernandez Lynch
I Background and Foundations 19
Introduction 21
Aaron S. Kesselheim
1 Legal and Regulatory Issues in Biospecimen Research: National
and International Perspectives 25
David Peloquin, Mark Barnes, and Barbara E. Bierer
2 Property Rights and the Control of Human Biospecimens 47
Russell Korobkin
3 Research with Biospecimens: Tensions, Tradeoffs, and Trust 67
Elisa A. Hurley, Kimberly Hensle Lowrance, and Avery Avrakotos
II Roots of the Debate: Autonomy, Justice, and Privacy 85
Introduction 87
Steven Joffe
4 Research on Human Tissue Samples: Balancing Autonomy vs.
Justice 91
David Korn and Rachel E. Sachs
5 Biospecimens, Commercial Research, and the Elusive Public
Benefit Standard 107
Barbara J. Evans and Eric M. Mesiin
viii
Contents
6 What Specimen Donors Want (and Considerations That May
Sometimes Matter More) 125
Suzanne M. Rivera and Heide Aungst
7 Assessing Risks to Privacy in Biospecimen Research 143
Ellen Wright Clayton and Bradley A. Malin
III Consent and Its Implications 159
Introduction 161
P. Pearl O'Rourke
8 Broad Consent for Research on Biospecimens 167
Christine Grady, Lisa Eckstein, Benjamin Berkman, Dan Brock,
Sara Chandros Hull, Bernard Lo, Rebecca Pentz, Carol Weil,
Benjamin S. Wilfond, and David Wendler
9 Evolving Consent: Insights from Researchers and Participants in
the Age of Broad Consent and Data Sharing 185
Nanibaa' A. Garrison
10 The Ethics of the Biospecimen Package Deal: Coercive? Undue?
Just Wrong? Or Maybe Not? 201
Ivor Pritchard and Julie Kaneshiro
IV Special Populations and Contexts 219
Introduction 221
Pamela Gavin
11 Biorepositories and Precision Medicine: Implications for
Underserved and Vulnerable Populations 225
Aaron J. Goldenberg and Suzanne M. Rivera
12 The Ethical Management of Residual Newborn Screening
Bloodspots 243
Jeffrey R. Botkin, Erin Rothwell, Rebecca A* Anderson, and
Aaron J. Goldenberg
13 Informed Consent for Genetic Research on Rare Diseases: Insights
from Empirical Research 257
Sara Chandros Hull
14 Considerations for the Use of Biospecimens in Induced Pluripotent
Stem (iPS) Cell Research 273
Geoffrey Lomax and Heide Aungst
Contents
¡x
V Governance, Accountability, and Operational Considerations 291
Introduction 293
Barbara E. Bierer
15 Governance Issues for Biorepositories and Biospecimen
Research 299
Karen J. Maschke
16 The Rise of Patient-Driven Research on Biospecimens and Data:
The Second Revolution 317
Susan M. Wolf and Isaac S. Kohane
17 Informing the Public and Including It in Discussions about
Biospecimens 335
Jane Perlmutter and Heide Aungst
18 Investigator's Commitment during the Consent Process for
Biospecimen Research 353
Erin RothweJ) and Erin Johnson
19 Biospecimen Repositories in the Era of Precision Medicine:
Perspectives from a Biobanker "in the Trenches" 367
Quinn T. Ostrom and Jill S. Barnholtz-Sloan
20 Operationalizing Institutional Research Biospecimen Repositories:
A Plan to Address Practical and Legal Considerations 383
Kate Gallin Heffernan, Emily Chi Fogler, Marylana Saadeh Helou,
and Andrew P. Rusczek
Contributors 403
Index 409 |
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| author_facet | Bierer, Barbara E. Rivera, Suzanne M. 1969- Lynch, Holly Fernandez Bierer, Barbara E. Cohen, I. Glenn 1978- Rivera, Suzanne M. 1969- |
| author_role | aut aut |
| author_sort | Bierer, Barbara E. |
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| discipline | Gesundheitswissenschaften Philosophie Theologie / Religionswissenschaften |
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| indexdate | 2024-09-24T00:22:44Z |
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| isbn | 9780262036108 |
| language | English |
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| series2 | Basic bioethics |
| spelling | Specimen science ethics and policy implications edited by Holly Fernandez Lynch, Barbara E. Bierer, I. Glenn Cohen, and Suzanne M. Rivera Cambridge, Massachusetts ; London, England The MIT Press [2017] ix, 422 Seiten Diagramme 24 cm txt rdacontent n rdamedia nc rdacarrier Basic bioethics Literaturangaben "This volume was based on a publiuc conference held et Harvard Law School in November 2015, ..." - Acknowledgements Medizinische Ethik (DE-588)4074672-0 gnd rswk-swf Biologisches Material (DE-588)4145633-6 gnd rswk-swf Bioethik (DE-588)4006791-9 gnd rswk-swf (DE-588)1071861417 Konferenzschrift gnd-content Biologisches Material (DE-588)4145633-6 s Bioethik (DE-588)4006791-9 s Medizinische Ethik (DE-588)4074672-0 s DE-604 Lynch, Holly Fernandez (DE-588)1036099555 edt Bierer, Barbara E. edt aut Cohen, I. Glenn 1978- (DE-588)1035815990 edt Rivera, Suzanne M. 1969- (DE-588)1148292527 edt aut Public Conference 2015.11 Harvard Law School, Cambridge Sonstige oth Digitalisierung UB Regensburg - ADAM Catalogue Enrichment application/pdf http://bvbr.bib-bvb.de:8991/F?func=service&doc_library=BVB01&local_base=BVB01&doc_number=030488932&sequence=000002&line_number=0001&func_code=DB_RECORDS&service_type=MEDIA Inhaltsverzeichnis |
| spellingShingle | Bierer, Barbara E. Rivera, Suzanne M. 1969- Specimen science ethics and policy implications Medizinische Ethik (DE-588)4074672-0 gnd Biologisches Material (DE-588)4145633-6 gnd Bioethik (DE-588)4006791-9 gnd |
| subject_GND | (DE-588)4074672-0 (DE-588)4145633-6 (DE-588)4006791-9 (DE-588)1071861417 |
| title | Specimen science ethics and policy implications |
| title_auth | Specimen science ethics and policy implications |
| title_exact_search | Specimen science ethics and policy implications |
| title_full | Specimen science ethics and policy implications edited by Holly Fernandez Lynch, Barbara E. Bierer, I. Glenn Cohen, and Suzanne M. Rivera |
| title_fullStr | Specimen science ethics and policy implications edited by Holly Fernandez Lynch, Barbara E. Bierer, I. Glenn Cohen, and Suzanne M. Rivera |
| title_full_unstemmed | Specimen science ethics and policy implications edited by Holly Fernandez Lynch, Barbara E. Bierer, I. Glenn Cohen, and Suzanne M. Rivera |
| title_short | Specimen science |
| title_sort | specimen science ethics and policy implications |
| title_sub | ethics and policy implications |
| topic | Medizinische Ethik (DE-588)4074672-0 gnd Biologisches Material (DE-588)4145633-6 gnd Bioethik (DE-588)4006791-9 gnd |
| topic_facet | Medizinische Ethik Biologisches Material Bioethik Konferenzschrift |
| url | http://bvbr.bib-bvb.de:8991/F?func=service&doc_library=BVB01&local_base=BVB01&doc_number=030488932&sequence=000002&line_number=0001&func_code=DB_RECORDS&service_type=MEDIA |
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