Specimen science: ethics and policy implications
Gespeichert in:
| Beteiligte Personen: | , |
|---|---|
| Weitere beteiligte Personen: | , |
| Format: | Buch |
| Sprache: | Englisch |
| Veröffentlicht: |
Cambridge, Massachusetts ; London, England
The MIT Press
[2017]
|
| Schriftenreihe: | Basic bioethics
|
| Schlagwörter: | |
| Links: | 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 |
| Beschreibung: | Literaturangaben "This volume was based on a publiuc conference held et Harvard Law School in November 2015, ..." - Acknowledgements |
| Umfang: | 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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Datensatz im Suchindex
| _version_ | 1819287777915699200 |
|---|---|
| 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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| genre_facet | Konferenzschrift |
| id | DE-604.BV045098308 |
| illustrated | Not Illustrated |
| indexdate | 2024-12-20T18:17:58Z |
| institution | BVB |
| isbn | 9780262036108 |
| language | English |
| oai_aleph_id | oai:aleph.bib-bvb.de:BVB01-030488932 |
| oclc_num | 1011672109 |
| open_access_boolean | |
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| owner_facet | DE-11 DE-355 DE-BY-UBR |
| physical | ix, 422 Seiten Diagramme 24 cm |
| publishDate | 2017 |
| publishDateSearch | 2017 |
| publishDateSort | 2017 |
| publisher | The MIT Press |
| record_format | marc |
| series2 | Basic bioethics |
| spellingShingle | Bierer, Barbara E. Rivera, Suzanne M. 1969- Specimen science ethics and policy implications Biologisches Material (DE-588)4145633-6 gnd Medizinische Ethik (DE-588)4074672-0 gnd Bioethik (DE-588)4006791-9 gnd |
| subject_GND | (DE-588)4145633-6 (DE-588)4074672-0 (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 | Biologisches Material (DE-588)4145633-6 gnd Medizinische Ethik (DE-588)4074672-0 gnd Bioethik (DE-588)4006791-9 gnd |
| topic_facet | Biologisches Material Medizinische Ethik Bioethik Konferenzschrift |
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