Specimen science : ethics and policy implications / edited by Holly Fernandez Lynch, Barbara E. Bierer, I. Glenn Cohen, and Suzanne M. Rivera.

Format
Book
Language
English
Published/​Created
Cambridge, Massachusetts : The MIT Press, [2017]
Description
ix, 422 pages : illustrations ; 24 cm.

Availability

Copies in the Library

Location Call Number Status Location Service Notes
ReCAP - Remote StorageQH231 .S64 2017 Browse related items Request

    Details

    Subject(s)
    Editor
    Series
    Basic bioethics [More in this series]
    Summary note
    Advances in medicine often depend on the effective collection, storage, research use, and sharing of human biological specimens and associated data. But what about the sources of such specimens? When a blood specimen is drawn from a vein in your arm, is that specimen still you? Is it your property, intellectual or otherwise? Should you be allowed not only to consent to its use in research but also to specify under what circumstances it may be used? These and other questions are at the center of a vigorous debate over the use of human biospecimens in research. In this book, experts offer legal, regulatory, and ethical perspectives on balancing social benefit and human autonomy in biospecimen research. After discussing the background to current debates as well as several influential cases, including that of Henrietta Lacks, the contributors consider the rights, obligations, risks, and privacy of the specimen source; different types of informed consent under consideration (broad, blanket, and specific); implications for special patient and researcher communities; and the governance of biospecimen repositories and the responsibilities of investigators.
    Bibliographic references
    Includes bibliographical references and index.
    Contents
    • Introduction / Suzanne M. Rivera, Barbara E. Bierer, I. Glenn Cohen, Holly Fernandez Lynch
    • I. Background and foundations. Introduction / Aaron S. Kesselheim ; Legal and regulatory issues in biospecimen research : national and international perspectives / David Peloquin, Mark Barnes, and Barbara E. Bierer ; Property rights and the control of human biospecimens / Russell Korobkin ; Research with biospecimens : tensions, tradeoffs, and trust / Elisa A. Hurley, Kimberly Hensle Lowrance, and Avery Avrakotos
    • II. Roots of the debate : autonomy, justice, and privacy. Introduction / Steven Joffe ; Research on human tissue samples : balancing autonomy vs. justice / David Korn and Rachel E. Sachs ; Biospecimens, commercial research, and the elusive public benefit standard / Barbara J. Evans and Eric M. Meslin ; What specimen donors want (and considerations that may sometimes matter more) / Suzanne M. Rivera and Heide Aungst ; Assessing risks to privacy in biospecimen research / Ellen Wright Clayton and Bradley A. Malin
    • III. Consent and its implications. Introduction / P. Pearl O'Rourke ; Broad consent for research on biospecimens / Christine Grady, Lisa Eckstein, Benjamin Berkman, Dan Brock, Sara Chandros Hull, Bernard Lo, Rebecca Pentz, Carol Weil, Benjamin S. Wilfond, and David Wendler ; Evolving consent : insights from researchers and participants in the age of broad consent and data sharing / Nanibaa' A. Garrison ; The ethics of the biospecimen package deal : coercive? Undue? Just wrong? Or maybe not? / Ivor Pritchard and Julie Kaneshiro
    • IV. Special populations and contexts. Introduction / Pamela Gavin ; Biorepositories and precision medicine : implications for underserved and vulnerable populations / Aaron J. Goldenberg and Suzanne M. Rivera ; The ethical management of residual newborn screening bloodspots / Jeffrey R. Botkin, Erin Rothwell, Rebecca A. Anderson, and Aaron J. Goldenberg ; Informed consent for genetic research on rare diseases : insights from empirical research / Sara Chandros Hull ; Considerations for the use of biospecimens in induced pluripotent stem (iPS) cell research / Geoffrey Lomax and Heide Aungst
    • V. Governance, accountability, and operational considerations. Introduction / Barbara E. Bierer ; Governance issues for biorepositories and biospecimen research / Karen J. Maschke ; The rise of patient-driven research on biospecimens and data : the second revolution / Susan M. Wolf and Isaac S. Kohane ; Informing the public and including it in discussions about biospecimens / Jane Perlmutter and Heide Aungst ; Investigator's commitment during the consent process for biospecimen research / Erin Rothwell and Erin Johnson ; Biospecimen repositories in the era of precision medicine : perspectives from a biobanker "in the trenches" / Quinn T. Ostrom and Jill S. Barnholtz-Sloan ; Operationalizing institutional research biospecimen repositories : a plan to address practical and legal considerations / Kate Gallin Heffernan, Emily Chi Fogler, Marylana Saadeh Helou, and Andrew P. Rusczek.
    ISBN
    • 9780262036108 (hardcover : alkaline paper)
    • 026203610X (hardcover : alkaline paper)
    LCCN
    2016041471
    OCLC
    959200506
    Statement on language in description
    Princeton University Library aims to describe library materials in a manner that is respectful to the individuals and communities who create, use, and are represented in the collections we manage. Read more...
    Other views
    Staff view

    Supplementary Information