Screen LibrarySpecimen science : ethics and policy implications /
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| Group Author: | ; ; ; |
|---|---|
| Published: |
The MIT Press,
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| Publisher Address: | Cambridge, Massachusetts : |
| Publication Dates: | [2017] |
| Literature type: | Book |
| Language: | English |
| Series: |
Basic bioethics
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| Subjects: | |
| Carrier Form: | ix, 422 pages : illustrations, forms ; 24 cm. |
| Bibliography: | Includes bibliographical references and index. |
| ISBN: |
9780262036108 (hardcover : alkaline paper) : 026203610X (hardcover : alkaline paper) |
| Index Number: | QH231 |
| CLC: |
Q-05 Q-34 |
| Call Number: | Q-34/S741 |
| Contents: |
Introduction / Background and foundations. Legal and regulatory issues in biospecimen research : national and international perspectives / Property rights and the control of human biospecimens / Research with biospecimens : tensions, tradeoffs, and trust / Roots of the debate : autonomy, justice, and privacy. Research on human tissue samples : balancing autonomy vs. justice / Biospecimens, commercial research, and the elusive public benefit standard / What specimen donors want (and considerations that may sometimes matter more) / Assessing risks to privacy in biospecimen research / Consent and its implications. Broad consent for research on biospecimens / Evolving consent : insights from researchers and participants in the age of broad consent and data sharing / The ethics of the biospecimen package deal : coercive? Undue? Just wrong? Or maybe not? / Special populations and contexts. Biorepositories and precision medicine : implications for underserved and vulnerable populations / The ethical management of residual newborn screening bloodspots / Informed consent for genetic research on rare diseases : insights from empirical research / Considerations for the use of biospecimens in induced pluripotent stem (iPS) cell research / Governance, accountability, and operational considerations. Governance issues for biorepositories and biospecimen research / The rise of patient-driven research on biospecimens and data : the second revolution / Informing the public and including it in discussions about biospecimens / Investigator's commitment during the consent process for biospecimen research / Biospecimen repositories in the era of precision medicine : perspectives from a biobanker "in the trenches" / Operationalizing institutional research biospecimen repositories : a plan to address practical and legal considerations / |