The Human Microbiome: Ethical, Legal and Social Concerns

Hardcover | July 30, 2013

EditorRosamond Rhodes, Nada Gligorov, Abraham Paul Schwab

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The human microbiome is the bacteria, viruses, and fungi that cover our skin, line our intestines, and flourish in our body cavities. Work on the human microbiome is new, but it is quickly becoming a leading area of biomedical research. What scientists are learning about humans and ourmicrobiomes could change medical practice by introducing new treatment modalities. This new knowledge redefines us as superorganisms comprised of the human body and the collection of microbes that inhabit it and reveals how much we are a part of our environment. The understanding that microbes arenot only beneficial but sometimes necessary for survival recasts our interaction with microbes from adversarial to neighborly. This volume explores some of the science that makes human microbiome research possible. It then considers ethical, legal, and social concerns raised by microbiome research. Chapters explore issues related to personal identity, property rights, and privacy. The authors reflect on how human microbiomeresearch challenges reigning views on public health and research ethics. They also address the need for thoughtful policies and procedures to guide the use of the biobanked human samples required for advancing this new domain of research. In the course of these explorations, they introduce examplesfrom the history of biomedical science and recent legal cases that shed light on the issues and inform the policy recommendations they offer at the end of each topic's discussion. This volume is the product of an NIH Human Microbiome Project grant. It represents three years of conversations focused on consensus formation by the twenty-seven members of the interdisciplinary Microbiome Working Group.

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The human microbiome is the bacteria, viruses, and fungi that cover our skin, line our intestines, and flourish in our body cavities. Work on the human microbiome is new, but it is quickly becoming a leading area of biomedical research. What scientists are learning about humans and ourmicrobiomes could change medical practice by introd...

Rosamond Rhodes, Ph.D., is Professor of Medical Education and Director of Bioethics Education at Icahn School of Medicine at Mount Sinai, Professor of Philosophy at The Graduate Center, CUNY, and Professor of Bioethics and Associate Director of the Union-Mount Sinai Bioethics Program. She writes on a broad array of issues in bioethics....

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Paperback|Aug 5 1998

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Format:HardcoverDimensions:288 pages, 9.25 × 6.12 × 0.98 inPublished:July 30, 2013Publisher:Oxford University PressLanguage:English

The following ISBNs are associated with this title:

ISBN - 10:0199829411

ISBN - 13:9780199829415

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Table of Contents

AcknowledgementsRosamond Rhodes: Introduction: Looking Back and Looking ForwardThe Project CollaboratorsThe Scope of this VolumeReading this Book1. Lily E. Frank, Martin J. Blaser, Kurt Hirschhorn, Daniel A. Moros, Matthew E. Rhodes, Sean Philpott: The Human Microbiome: Science, History and ResearchIntroduction: Microbes and MicrobiologyThe Role of Microorganisms in the EnvironmentThe Use of Microorganism in Industry and Food ProductionThe History of Microorganisms in Human Health and DiseaseThe Human MicrobiomeHuman Microbiome Project and the National Institute of HealthResearch Tools and MethodsAcquisition of the MicrobiomeInteractions between the Microbiome and the Host GenomeManipulating the Microbiome for Medical PurposesConclusions2. Nada Gligorov, Jody Azzouni, Douglas P. Lackey, Arnold Zweig: Personal Identity: Our Microbes, OurselvesIntroductionPersonal Identity over TimeThe Human Microbiome and Numerical IdentityThe Human Microbiome and Conceptions of SelfThe Impact of Science on CommonsenseConclusionPolicy Recommendations3. Mary Ann Baily, Abraham P. Schwab, Joseph Goldfarb, Kurt Hirschhorn, Rosamond Rhodes, Brett Trusko: Property and Research on the Human MicrobiomeFour Controversial CasesIntroductionOwnership and Property in PhilosophyOwnership and Property in the Social SciencesOwnership and Property in the Context of Biomedical ResearchCurrent Property Structures and Research on the Human MicrobiomePatentsCopyrightsProperty Rights and Biological SamplesHenrietta Lacks and HeLa CellsJohn Moore's Leukemia CellsConclusionPolicy Recommendations4. Nada Gligorov, Lily E. Frank, Abraham P. Schwab, Brett Trusko: Privacy, Confidentiality, and New Ways of Knowing MoreIntroductionPhilosophical Approaches to PrivacyConfidentialityLegislations to Protect Medical and Research InformationData SharingConclusionPolicy Recommendations5. Rosamond Rhodes, Joseph W. Dauben, Lily E. Frank, Daniel A. Moros, Sean Philpott: Research EthicsIntroductionThe Landscape of Microbiome ResearchHistorical Development of Research Ethics Regulation and GuidelinesResearch Ethics and Human Microbiome ResearchCritical Reflections on the U.S. Framework for Human Subject ResearchImplications for the Conduct of Human Subject Microbiome ResearchResearch on ProbioticsConclusionsPolicy Recommendations6. Abraham P. Schwab, Barbara Brenner, Joseph Goldfarb, Rochelle Hirschhorn, Sean Philpott: Biobanks and the Human MicrobiomeIntroductionWhat is a Biobank?Human Microbiome BiobanksEthical, Legal, and Social Implications (ELSI) of Human Microbiome BiobanksFederal Regulations Applied to BiobanksRisks and Human Microbiome BiobanksBenefits and Human Microbiome BiobanksObtaining Consent from Human Microbiome Biobank DonorsInternational BiobanksCommunity Consultation: A Reasonable Approach to Participatory ResearchDiscrimination and Other IssuesConclusionPolicy Recommendations7. Rosamond Rhodes, Stefan Bernard Baumrin, Martin J. Blaser, William J. Earle, Debbie Indyk, Ethylin Wang Jabs, Daniel A. Moros, Lynne D. Richardson, Henry S. Sacks: Public Health and Research on PopulationsMicrobes and Public HealthPublic Health, Liberty, and PrivacyPublic Health FunctionsPublic Health Agency PowersPublic Health MethodsResearch Regulations and Public Health Data GatheringQuality Improvement, Quality Assurance and SurveillanceDe Minimis Risk: A Proposal for a New Category of Research RiskAdditional Factors in the Ethical Conduct of Population StudiesPrevention and EducationCautions for Public Health Policy MakersCoda: Further Philosophical Reflections on Public Health by William J. EarlePolicy RecommendationsGlossaryIndex

Editorial Reviews

"The microbiome is a relatively new area of medical attention. Ethical issues related to the microbiome have barely been identified, much less carefully analyzed. This volume is an excellent start toward that ethical analysis. Many of the arguments are persuasive and provocative. Inparticular, some contributors challenge the ethical need for anonymizing microbiome specimens as well as the need for individual informed consent for specific uses of these specimens. I highly recommend this volume for all those interested in the microbiome and in new frontiers in medical ethics." --Leonard M. Fleck, Michigan State University