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000811947 010__ $$a  2016041471
000811947 020__ $$a9780262036108$$q(hardcover)
000811947 020__ $$a026203610X$$q(hardcover)
000811947 035__ $$a(OCoLC)ocn959200506
000811947 035__ $$a811947
000811947 040__ $$aDLC$$beng$$erda$$cDLC$$dBDX$$dBTCTA$$dYDX$$dOCLCO$$dYDX$$dOCLCO$$dWEA$$dOBE$$dCHVBK$$dOCLCO
000811947 042__ $$apcc
000811947 049__ $$aISEA
000811947 05000 $$aQH231$$b.S64 2017
000811947 08200 $$a174.2$$223
000811947 24500 $$aSpecimen science :$$bethics and policy implications /$$cedited by Holly Fernandez Lynch, Barbara E. Bierer, I. Glenn Cohen, and Suzanne M. Rivera.
000811947 264_1 $$aCambridge, Massachusetts :$$bThe MIT Press,$$c[2017]
000811947 300__ $$aix, 422 pages :$$billustrations ;$$c24 cm.
000811947 336__ $$atext$$btxt$$2rdacontent
000811947 337__ $$aunmediated$$bn$$2rdamedia
000811947 338__ $$avolume$$bnc$$2rdacarrier
000811947 4901_ $$aBasic bioethics
000811947 504__ $$aIncludes bibliographical references and index.
000811947 50500 $$tIntroduction /$$rSuzanne M. Rivera, Barbara E. Bierer, I. Glenn Cohen, Holly Fernandez Lynch --$$gI.$$tBackground and foundations.$$tIntroduction /$$rAaron S. Kesselheim --$$tLegal and regulatory issues in biospecimen research : national and international perspectives /$$rDavid Peloquin, Mark Barnes, and Barbara E. Bierer --$$tProperty rights and the control of human biospecimens /$$rRussell Korobkin --$$tResearch with biospecimens : tensions, tradeoffs, and trust /$$rElisa A. Hurley, Kimberly Hensle Lowrance, and Avery Avrakotos --$$gII.$$tRoots of the debate : autonomy, justice, and privacy.$$tIntroduction /$$rSteven Joffe --$$tResearch on human tissue samples : balancing autonomy vs. justice /$$rDavid Korn and Rachel E. Sachs --$$tBiospecimens, commercial research, and the elusive public benefit standard /$$rBarbara J. Evans and Eric M. Meslin --$$tWhat specimen donors want (and considerations that may sometimes matter more) /$$rSuzanne M. Rivera and Heide Aungst --$$tAssessing risks to privacy in biospecimen research /$$rEllen Wright Clayton and Bradley A. Malin --$$gIII.$$tConsent and its implications.$$tIntroduction /$$rP. Pearl O'Rourke --$$tBroad consent for research on biospecimens /$$rChristine Grady, Lisa Eckstein, Benjamin Berkman, Dan Brock, Sara Chandros Hull, Bernard Lo, Rebecca Pentz, Carol Weil, Benjamin S. Wilfond, and David Wendler --$$tEvolving consent : insights from researchers and participants in the age of broad consent and data sharing /$$rNanibaa' A. Garrison --$$tThe ethics of the biospecimen package deal : coercive? Undue? Just wrong? Or maybe not? /$$rIvor Pritchard and Julie Kaneshiro --$$gIV.$$tSpecial populations and contexts.$$tIntroduction /$$rPamela Gavin --$$tBiorepositories and precision medicine : implications for underserved and vulnerable populations /$$rAaron J. Goldenberg and Suzanne M. Rivera --$$tThe ethical management of residual newborn screening bloodspots /$$rJeffrey R. Botkin, Erin Rothwell, Rebecca A. Anderson, and Aaron J. Goldenberg --$$tInformed consent for genetic research on rare diseases : insights from empirical research /$$rSara Chandros Hull --$$tConsiderations for the use of biospecimens in induced pluripotent stem (iPS) cell research /$$rGeoffrey Lomax and Heide Aungst --$$gV.$$tGovernance, accountability, and operational considerations.$$tIntroduction /$$rBarbara E. Bierer --$$tGovernance issues for biorepositories and biospecimen research /$$rKaren J. Maschke --$$tThe rise of patient-driven research on biospecimens and data : the second revolution /$$rSusan M. Wolf and Isaac S. Kohane --$$tInforming the public and including it in discussions about biospecimens /$$rJane Perlmutter and Heide Aungst --$$tInvestigator's commitment during the consent process for biospecimen research /$$rErin Rothwell and Erin Johnson --$$tBiospecimen repositories in the era of precision medicine : perspectives from a biobanker "in the trenches" /$$rQuinn T. Ostrom and Jill S. Barnholtz-Sloan --$$tOperationalizing institutional research biospecimen repositories : a plan to address practical and legal considerations /$$rKate Gallin Heffernan, Emily Chi Fogler, Marylana Saadeh Helou, and Andrew P. Rusczek.
000811947 650_0 $$aBiological specimens$$xMoral and ethical aspects.
000811947 650_0 $$aBioethics$$xLegal issues.
000811947 7001_ $$aLynch, Holly Fernandez,$$eeditor.
000811947 7001_ $$aBierer, Barbara E.,$$eeditor.
000811947 7001_ $$aCohen, I. Glenn,$$eeditor.
000811947 7001_ $$aRivera, Suzanne Marie,$$d1969-$$eeditor.
000811947 830_0 $$aBasic bioethics.
000811947 85200 $$bgen$$hQH231$$i.S64$$i2017
000811947 909CO $$ooai:library.usi.edu:811947$$pGLOBAL_SET
000811947 980__ $$aBIB
000811947 980__ $$aBOOK