Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research

Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research PDF

Author: Institute of Medicine

Publisher: National Academies Press

Published: 2010-11-23

Total Pages: 85

ISBN-13: 0309177138

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Newborn screening samples are used to test more than 4 million infants each year for life-threatening diseases that are treatable if found at birth. These specimens also represent a potentially invaluable resource for public health and biomedical research. The IOM held a workshop to examine issues surrounding the use of residual specimens for translational research.

Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research

Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research PDF

Author: Roundtable on Translating Genomic-Based Research for Health

Publisher:

Published: 2010-11-23

Total Pages: 84

ISBN-13: 9780309383103

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Newborn screening samples are used to test more than 4 million infants each year for life-threatening diseases that are treatable if found at birth. These specimens also represent a potentially invaluable resource for public health and biomedical research. The IOM held a workshop to examine issues surrounding the use of residual specimens for translational research.

Designing Clinical Research

Designing Clinical Research PDF

Author: Warren S. Browner

Publisher: Lippincott Williams & Wilkins

Published: 2022-01-27

Total Pages: 589

ISBN-13: 1975174429

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For more than 30 years, Designing Clinical Research has set the standard as the most practical, authoritative guide for physicians, nurses, pharmacists, and other practitioners involved in all forms of clinical and public health research. Using a reader-friendly writing style, Drs. Warren S. Browner, Thomas B. Newman, Steven R. Cummings, Deborah G. Grady, Alison J. Huang, Alka M. Kanaya, and Mark J. Pletcher, all of the University of California, San Francisco, provide up-to-date, commonsense approaches to the challenging judgments involved in designing, funding, and implementing a study. This state-of-the-art fifth edition features new figures, tables, and design, as well as new editors, new content, and extensively updated references to keep you current.

Privacy, Confidentiality, and Health Research

Privacy, Confidentiality, and Health Research PDF

Author: William W. Lowrance

Publisher: Cambridge University Press

Published: 2012-06-21

Total Pages: 203

ISBN-13: 1139510827

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The potential of the e-health revolution, increased data sharing, database linking, biobanks and new techniques such as geolocation and genomics to advance human health is immense. For the full potential to be realized, though, privacy and confidentiality will have to be dealt with carefully. Problematically, many conventional approaches to such pivotal matters as consent, identifiability, and safeguarding and security are inadequate. In many places, research is impeded by an overgrown thicket of laws, regulations, guidance and governance. The challenges are being heightened by the increasing use of biospecimens, and by the globalization of research in a world that has not globalized privacy protection. Drawing on examples from many developed countries and legal jurisdictions, the book critiques the issues, summarizes various ethics, policy, and legal positions (and revisions underway), describes innovative solutions, provides extensive references and suggests ways forward.

Saving Babies?

Saving Babies? PDF

Author: Stefan Timmermans

Publisher: University of Chicago Press

Published: 2015-05-06

Total Pages: 320

ISBN-13: 022627361X

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Introduction: the consequences of newborn screening -- The expansion of newborn screening -- Patients-in-waiting -- Shifting disease ontologies -- Is my baby normal? -- The limits of prevention -- Does expanded newborn screening save lives? -- Conclusion: the future of expanded newborn screening

Informing the Future

Informing the Future PDF

Author: Institute of Medicine

Publisher: National Academies Press

Published: 2011-10-12

Total Pages: 203

ISBN-13: 0309215366

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This report illustrates the work of IOM committees in selected, major areas in recent years, followed by a description of IOM's convening and collaborative activities and fellowship programs. The last section provides a comprehensive bibliography of IOM reports published since 2007.

Sustaining Surveillance: The Importance of Information for Public Health

Sustaining Surveillance: The Importance of Information for Public Health PDF

Author: John G. Francis

Publisher: Springer Nature

Published: 2021-03-17

Total Pages: 224

ISBN-13: 3030639282

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This book presents a comprehensive theory of the ethics and political philosophy of public health surveillance based on reciprocal obligations among surveillers, those under surveillance, and others potentially affected by surveillance practices. Public health surveillance aims to identify emerging health trends, population health trends, treatment efficacy, and methods of health promotion--all apparently laudatory goals. Nonetheless, as with anti-terrorism surveillance, public health surveillance raises complex questions about privacy, political liberty, and justice both of and in data use. Individuals and groups can be chilled in their personal lives, stigmatized or threatened, and used for the benefit of others when health information is wrongfully collected or used. Transparency and openness about data use, public involvement in decisions, and just distribution of the benefits of surveillance are core elements in the justification of surveillance practices. Understanding health surveillance practices, the concerns it raises, and how to respond to them is critical not only to ethical and trustworthy but also to publicly acceptable and ultimately sustainable surveillance practices. The book is of interest to scholars and practitioners of the ethics and politics of public health, bioethics, privacy and data technology, and health policy. These issues are ever more pressing in pandemic times, where misinformation can travel quickly and suspicions about disease spread, treatment efficacy, and vaccine safety can have devastating public health effects.

The PKU Paradox

The PKU Paradox PDF

Author: Diane B. Paul

Publisher: JHU Press

Published: 2013-12

Total Pages: 316

ISBN-13: 1421411318

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How did a disease of marginal public health significance acquire paradigmatic status in public health and genetics? In a lifetime of practice, most physicians will never encounter a single case of PKU. Yet every physician in the industrialized world learns about the disease in medical school and, since the early 1960s, the newborn heel stick test for PKU has been mandatory in many countries. Diane B. Paul and Jeffrey P. Brosco’s beautifully written book explains this paradox. PKU (phenylketonuria) is a genetic disorder that causes severe cognitive impairment if it is not detected and treated with a strict and difficult diet. Programs to detect PKU and start treatment early are deservedly considered a public health success story. Some have traded on this success to urge expanded newborn screening, defend basic research in genetics, and confront proponents of genetic determinism. In this context, treatment for PKU is typically represented as a simple matter of adhering to a low-phenylalanine diet. In reality, the challenges of living with PKU are daunting. In this first general history of PKU, a historian and a pediatrician explore how a rare genetic disease became the object of an unprecedented system for routine testing. The PKU Paradox is informed by interviews with scientists, clinicians, policymakers, and individuals who live with the disease. The questions it raises touch on ongoing controversies about newborn screening and what happens to blood samples collected at birth.

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