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Responsible Genomic Data Sharing

Responsible Genomic Data Sharing
  • Author : Xiaoqian Jiang,Haixu Tang
  • Publisher :Unknown
  • Release Date :2020-03-14
  • Total pages :210
  • ISBN : 0128163399
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Summary : Responsible Genomic Data Sharing: Challenges and Approaches brings together international experts in genomics research, bioinformatics and digital security who analyze common challenges in genomic data sharing, privacy preserving technologies, and best practices for large-scale genomic data sharing. Practical case studies, including the Global Alliance for Genomics and Health, the Beacon Network, and the Matchmaker Exchange, are discussed in-depth, illuminating pathways forward for new genomic data sharing efforts across research and clinical practice, industry and academia. Addresses privacy preserving technologies and how they can be applied to enable responsible genomic data sharing Employs illustrative case studies and analyzes emerging genomic data sharing efforts, common challenges and lessons learned Features chapter contributions from international experts in responsible approaches to genomic data sharing

Genomic Data Sharing

Genomic Data Sharing
  • Author : Jennifer B. Mccormick,Jyotishman Pathak
  • Publisher :Unknown
  • Release Date :2021-06-01
  • Total pages :360
  • ISBN : 0128198044
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Summary : Genomic Data Sharing: Case Studies, Challenges, and Opportunities for Precision Medicine provides a comprehensive overview of current and emerging issues in genomic data sharing. In this book, international leaders in genomic data examine these issues in-depth, offering practical case studies that highlight key successes, challenges and opportunities. Sections discuss the eMERGE Network, Undiagnosed Disease Network, Vanderbilt Biobank, Marshfield Clinic Biobank, Minnesota Authorization, Rochester Epidemiology Project, NIH sponsored biobanks, GINA, and Global Alliance for Genomics and Health (GA4GH). In addition to these perspectives from the frontlines, the book also provides succinct overviews of ethical, legal, social and IT challenges. Clinician investigators, clinicians affiliated with academic medical centers, policymakers and regulators will also gain insights that will allow them to navigate the increasingly complex ethical, social and clinical landscape of genomic data sharing. Covers both technical and ELSI (ethical, legal, and social implications) perspectives on genomic data sharing Includes applied case studies of existing genomic data sharing consortia, including the eMERGE Network, Undiagnosed Disease Network, and the Global Alliance for Genomics and Health (GA4GH), among others Features chapter contributions from international leaders in genomic data sharing

Human Genome Informatics

Human Genome Informatics
  • Author : Christophe Lambert,Darrol Baker,George P. Patrinos
  • Publisher :Unknown
  • Release Date :2018-08-02
  • Total pages :314
  • ISBN : 0128134313
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Summary : Human Genome Informatics: Translating Genes into Health examines the most commonly used electronic tools for translating genomic information into clinically meaningful formats. By analyzing and comparing interpretation methods of whole genome data, the book discusses the possibilities of their application in genomic and translational medicine. Topics such as electronic decision-making tools, translation algorithms, interpretation and translation of whole genome data for rare diseases are thoroughly explored. In addition, discussions of current human genome databases and the possibilities of big data in genomic medicine are presented. With an updated approach on recent techniques and current human genomic databases, the book is a valuable source for students and researchers in genome and medical informatics. It is also ideal for workers in the bioinformatics industry who are interested in recent developments in the field. Provides an overview of the most commonly used electronic tools to translate genomic information Brings an update on the existing human genomic databases that directly impact genome interpretation Summarizes and comparatively analyzes interpretation methods of whole genome data and their application in genomic medicine

Evaluation of a Trust-enabled Framework for Genomic Data Sharing Within an Insurance Context

Evaluation of a Trust-enabled Framework for Genomic Data Sharing Within an Insurance Context
  • Author : Mattia Preda
  • Publisher :Unknown
  • Release Date :2017
  • Total pages :229
  • ISBN : 09876543XX
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Summary :

Progress and Challenges in Precision Medicine

Progress and Challenges in Precision Medicine
  • Author : Mukesh Verma,Debmalya Barh
  • Publisher :Unknown
  • Release Date :2016-12-22
  • Total pages :344
  • ISBN : 0128095024
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Summary : Progress and Challenges in Precision Medicine presents an insightful overview to the myriad factors of personalized and precision medicine. The availability of the human genome, large amounts of data on individual genetic variations, environmental interactions, influence of lifestyle, and cutting-edge tools and technologies for big-data analysis have led to the age of personalized and precision medicine. Bringing together a global range of experts on precision medicine, this book collects previously scattered information into one concise volume which covers the most important developments so far in precision medicine and also suggests the most likely avenues for future development. The book includes clinical information, informatics, public policy implications, and information on case studies. It is a useful reference and background work for students, researchers, and clinicians working in the biomedical and medical fields, as well as policymakers in the health sciences. Provides an overview of the growing field of precision medicine Contains chapters from geographically diverse experts in their field Explores important aspects of precision medicine, including applications, ethics, and development

Sharing Research Data to Improve Public Health in Africa

Sharing Research Data to Improve Public Health in Africa
  • Author : National Academies of Sciences, Engineering, and Medicine,Division of Behavioral and Social Sciences and Education,Committee on Population
  • Publisher :Unknown
  • Release Date :2015-09-18
  • Total pages :102
  • ISBN : 0309378125
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Summary : Sharing research data on public health issues can promote expanded scientific inquiry and has the potential to advance improvements in public health. Although sharing data is the norm in some research fields, sharing of data in public health is not as firmly established. In March 2015, the National Research Council organized an international conference in Stellenbosch, South Africa, to explore the benefits of and barriers to sharing research data within the African context. The workshop brought together public health researchers and epidemiologists primarily from the African continent, along with selected international experts, to talk about the benefits and challenges of sharing data to improve public health, and to discuss potential actions to guide future work related to public health research data sharing. Sharing Research Data to Improve Public Health in Africa summarizes the presentations and discussions from this workshop.

Applied Genomics and Public Health

Applied Genomics and Public Health
  • Author : George P. Patrinos
  • Publisher :Unknown
  • Release Date :2019-11-13
  • Total pages :404
  • ISBN : 0128136960
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Summary : Applied Genomics and Public Health examines the interdisciplinary and growing area of how evidence-based genomic knowledge can be applied to public health, population health, healthcare and health policies. The book gathers experts from a variety of disciplines, including life sciences, social sciences, and health care to develop a comprehensive overview of the field. In addition, the book delves into subjects such as pharmacogenomics, genethics, big data, data translation and analysis, economic evaluation, genomic awareness and education, sociology, pricing and reimbursement, policy measures and economic evaluation in genomic medicine. This book is essential reading for researchers and students exploring applications of genomics to population and public health. In addition, it is ideal for those in the biomedical sciences, medical sociologists, healthcare professionals, nurses, regulatory bodies and health economists interested in learning more about this growing field. Explores the growing application of genomics to population and public health Features internationally renowned contributors from a variety of related fields Contains chapters on important topics such as genomic data sharing, genethics and public health genomics, genomics and sociology, and regulatory aspects of genomic medicine and pharmacogenomics

Superior

Superior
  • Author : Angela Saini
  • Publisher :Unknown
  • Release Date :2019-05-21
  • Total pages :256
  • ISBN : 0807076945
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Summary : 2019 Best-Of Lists: 10 Best Science Books of the Year (Smithsonian Magazine) · Best Science Books of the Year (NPR's Science Friday) · Best Science and Technology Books from 2019” (Library Journal) An astute and timely examination of the re-emergence of scientific research into racial differences. Superior tells the disturbing story of the persistent thread of belief in biological racial differences in the world of science. After the horrors of the Nazi regime in World War II, the mainstream scientific world turned its back on eugenics and the study of racial difference. But a worldwide network of intellectual racists and segregationists quietly founded journals and funded research, providing the kind of shoddy studies that were ultimately cited in Richard Herrnstein and Charles Murray’s 1994 title The Bell Curve, which purported to show differences in intelligence among races. If the vast majority of scientists and scholars disavowed these ideas and considered race a social construct, it was an idea that still managed to somehow survive in the way scientists thought about human variation and genetics. Dissecting the statements and work of contemporary scientists studying human biodiversity, most of whom claim to be just following the data, Angela Saini shows us how, again and again, even mainstream scientists cling to the idea that race is biologically real. As our understanding of complex traits like intelligence, and the effects of environmental and cultural influences on human beings, from the molecular level on up, grows, the hope of finding simple genetic differences between “races”—to explain differing rates of disease, to explain poverty or test scores, or to justify cultural assumptions—stubbornly persists. At a time when racialized nationalisms are a resurgent threat throughout the world, Superior is a rigorous, much-needed examination of the insidious and destructive nature of race science—and a powerful reminder that, biologically, we are all far more alike than different.

The Postgenomic Condition

The Postgenomic Condition
  • Author : Jenny Reardon
  • Publisher :Unknown
  • Release Date :2017-12-29
  • Total pages :304
  • ISBN : 022634519X
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Summary : Now that we have sequenced the human genome, what does it mean? In The Postgenomic Condition, Jenny Reardon critically examines the decade after the Human Genome Project, and the fundamental questions about meaning, value and justice this landmark achievement left in its wake. Drawing on more than a decade of research—in molecular biology labs, commercial startups, governmental agencies, and civic spaces—Reardon demonstrates how the extensive efforts to transform genomics from high tech informatics practiced by a few to meaningful knowledge beneficial to all exposed the limits of long-cherished liberal modes of knowing and governing life. Those in the American South challenged the value of being included in genomics when no hospital served their community. Ethicists and lawyers charged with overseeing Scottish DNA and data questioned how to develop a system of ownership for these resources when their capacity to create things of value—new personalized treatments—remained largely unrealized. Molecular biologists who pioneered genomics asked whether their practices of thinking could survive the deluge of data produced by the growing power of sequencing machines. While the media is filled with grand visions of precision medicine, The Postgenomic Condition shares these actual challenges of the scientists, entrepreneurs, policy makers, bioethicists, lawyers, and patient advocates who sought to leverage liberal democratic practices to render genomic data a new source of meaning and value for interpreting and caring for life. It brings into rich empirical focus the resulting hard on-the-ground questions about how to know and live on a depleted but data-rich, interconnected yet fractured planet, where technoscience garners significant resources, but deeper questions of knowledge and justice urgently demand attention.

Topological Data Analysis for Genomics and Evolution

Topological Data Analysis for Genomics and Evolution
  • Author : Raúl Rabadán,Andrew J. Blumberg
  • Publisher :Unknown
  • Release Date :2019-12-31
  • Total pages :229
  • ISBN : 1107159547
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Summary : An introduction to geometric and topological methods to analyze large scale biological data; includes statistics and genomic applications.

Indigenous Data Sovereignty

Indigenous Data Sovereignty
  • Author : Tahu Kukutai,John Taylor
  • Publisher :Unknown
  • Release Date :2016-11-14
  • Total pages :318
  • ISBN : 1760460311
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Summary : As the global ‘data revolution’ accelerates, how can the data rights and interests of indigenous peoples be secured? Premised on the United Nations Declaration on the Rights of Indigenous Peoples, this book argues that indigenous peoples have inherent and inalienable rights relating to the collection, ownership and application of data about them, and about their lifeways and territories. As the first book to focus on indigenous data sovereignty, it asks: what does data sovereignty mean for indigenous peoples, and how is it being used in their pursuit of self-determination? The varied group of mostly indigenous contributors theorise and conceptualise this fast-emerging field and present case studies that illustrate the challenges and opportunities involved. These range from indigenous communities grappling with issues of identity, governance and development, to national governments and NGOs seeking to formulate a response to indigenous demands for data ownership. While the book is focused on the CANZUS states of Canada, Australia, Aotearoa/New Zealand and the United States, much of the content and discussion will be of interest and practical value to a broader global audience. ‘A debate-shaping book … it speaks to a fast-emerging field; it has a lot of important things to say; and the timing is right.’ — Stephen Cornell, Professor of Sociology and Faculty Chair of the Native Nations Institute, University of Arizona ‘The effort … in this book to theorise and conceptualise data sovereignty and its links to the realisation of the rights of indigenous peoples is pioneering and laudable.’ — Victoria Tauli-Corpuz, UN Special Rapporteur on the Rights of Indigenous Peoples, Baguio City, Philippines

Real Science

Real Science
  • Author : John Ziman
  • Publisher :Unknown
  • Release Date :2002-06-24
  • Total pages :412
  • ISBN : 9780521893107
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Summary : A systematic, carefully reasoned, but non-technical analysis of the nature and significance of scientific knowledge.

Population Genomics with R

Population Genomics with R
  • Author : Emmanuel Paradis
  • Publisher :Unknown
  • Release Date :2020-03-13
  • Total pages :390
  • ISBN : 0429882424
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Summary : Population Genomics With R presents a multidisciplinary approach to the analysis of population genomics. The methods treated cover a large number of topics from traditional population genetics to large-scale genomics with high-throughput sequencing data. Several dozen R packages are examined and integrated to provide a coherent software environment with a wide range of computational, statistical, and graphical tools. Small examples are used to illustrate the basics and published data are used as case studies. Readers are expected to have a basic knowledge of biology, genetics, and statistical inference methods. Graduate students and post-doctorate researchers will find resources to analyze their population genetic and genomic data as well as help them design new studies. The first four chapters review the basics of population genomics, data acquisition, and the use of R to store and manipulate genomic data. Chapter 5 treats the exploration of genomic data, an important issue when analysing large data sets. The other five chapters cover linkage disequilibrium, population genomic structure, geographical structure, past demographic events, and natural selection. These chapters include supervised and unsupervised methods, admixture analysis, an in-depth treatment of multivariate methods, and advice on how to handle GIS data. The analysis of natural selection, a traditional issue in evolutionary biology, has known a revival with modern population genomic data. All chapters include exercises. Supplemental materials are available on-line (http://ape-package.ird.fr/PGR.html).

Enhancing Access to and Sharing of Data Reconciling Risks and Benefits for Data Re-use across Societies

Enhancing Access to and Sharing of Data Reconciling Risks and Benefits for Data Re-use across Societies
  • Author : OECD
  • Publisher :Unknown
  • Release Date :2019-11-26
  • Total pages :135
  • ISBN : 9264660658
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Summary : This report examines the opportunities of enhancing access to and sharing of data (EASD) in the context of the growing importance of artificial intelligence and the Internet of Things. It discusses how EASD can maximise the social and economic value of data re-use and how the related risks and challenges can be addressed. It highlights the trade-offs, complementarities and possible unintended consequences of policy action – and inaction. It also provides examples of EASD approaches and policy initiatives in OECD countries and partner economies.

Medical and Health Genomics

Medical and Health Genomics
  • Author : Dhavendra Kumar,Stylianos Antonarakis
  • Publisher :Unknown
  • Release Date :2016-06-04
  • Total pages :358
  • ISBN : 0127999221
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Summary : Medical and Health Genomics provides concise and evidence-based technical and practical information on the applied and translational aspects of genome sciences and the technologies related to non-clinical medicine and public health. Coverage is based on evolving paradigms of genomic medicine—in particular, the relation to public and population health genomics now being rapidly incorporated in health management and administration, with further implications for clinical population and disease management. Provides extensive coverage of the emergent field of health genomics and its huge relevance to healthcare management Presents user-friendly language accompanied by explanatory diagrams, figures, and many references for further study Covers the applied, but non-clinical, sciences across disease discovery, genetic analysis, genetic screening, and prevention and management Details the impact of clinical genomics across a diverse array of public and community health issues, and within a variety of global healthcare systems

The Algorithmic Foundations of Differential Privacy

The Algorithmic Foundations of Differential Privacy
  • Author : Cynthia Dwork,Aaron Roth
  • Publisher :Unknown
  • Release Date :2014
  • Total pages :286
  • ISBN : 9781601988188
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Summary : The problem of privacy-preserving data analysis has a long history spanning multiple disciplines. As electronic data about individuals becomes increasingly detailed, and as technology enables ever more powerful collection and curation of these data, the need increases for a robust, meaningful, and mathematically rigorous definition of privacy, together with a computationally rich class of algorithms that satisfy this definition. Differential Privacy is such a definition. The Algorithmic Foundations of Differential Privacy starts out by motivating and discussing the meaning of differential privacy, and proceeds to explore the fundamental techniques for achieving differential privacy, and the application of these techniques in creative combinations, using the query-release problem as an ongoing example. A key point is that, by rethinking the computational goal, one can often obtain far better results than would be achieved by methodically replacing each step of a non-private computation with a differentially private implementation. Despite some powerful computational results, there are still fundamental limitations. Virtually all the algorithms discussed herein maintain differential privacy against adversaries of arbitrary computational power -- certain algorithms are computationally intensive, others are efficient. Computational complexity for the adversary and the algorithm are both discussed. The monograph then turns from fundamentals to applications other than query-release, discussing differentially private methods for mechanism design and machine learning. The vast majority of the literature on differentially private algorithms considers a single, static, database that is subject to many analyses. Differential privacy in other models, including distributed databases and computations on data streams, is discussed. The Algorithmic Foundations of Differential Privacy is meant as a thorough introduction to the problems and techniques of differential privacy, and is an invaluable reference for anyone with an interest in the topic.

Medical Data Privacy Handbook

Medical Data Privacy Handbook
  • Author : Aris Gkoulalas-Divanis,Grigorios Loukides
  • Publisher :Unknown
  • Release Date :2015-11-26
  • Total pages :832
  • ISBN : 3319236334
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Summary : This handbook covers Electronic Medical Record (EMR) systems, which enable the storage, management, and sharing of massive amounts of demographic, diagnosis, medication, and genomic information. It presents privacy-preserving methods for medical data, ranging from laboratory test results to doctors’ comments. The reuse of EMR data can greatly benefit medical science and practice, but must be performed in a privacy-preserving way according to data sharing policies and regulations. Written by world-renowned leaders in this field, each chapter offers a survey of a research direction or a solution to problems in established and emerging research areas. The authors explore scenarios and techniques for facilitating the anonymization of different types of medical data, as well as various data mining tasks. Other chapters present methods for emerging data privacy applications and medical text de-identification, including detailed surveys of deployed systems. A part of the book is devoted to legislative and policy issues, reporting on the US and EU privacy legislation and the cost of privacy breaches in the healthcare domain. This reference is intended for professionals, researchers and advanced-level students interested in safeguarding medical data.

Anonymizing Health Data

Anonymizing Health Data
  • Author : Khaled El Emam,Luk Arbuckle
  • Publisher :Unknown
  • Release Date :2013-12-11
  • Total pages :228
  • ISBN : 1449363032
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Summary : Updated as of August 2014, this practical book will demonstrate proven methods for anonymizing health data to help your organization share meaningful datasets, without exposing patient identity. Leading experts Khaled El Emam and Luk Arbuckle walk you through a risk-based methodology, using case studies from their efforts to de-identify hundreds of datasets. Clinical data is valuable for research and other types of analytics, but making it anonymous without compromising data quality is tricky. This book demonstrates techniques for handling different data types, based on the authors’ experiences with a maternal-child registry, inpatient discharge abstracts, health insurance claims, electronic medical record databases, and the World Trade Center disaster registry, among others. Understand different methods for working with cross-sectional and longitudinal datasets Assess the risk of adversaries who attempt to re-identify patients in anonymized datasets Reduce the size and complexity of massive datasets without losing key information or jeopardizing privacy Use methods to anonymize unstructured free-form text data Minimize the risks inherent in geospatial data, without omitting critical location-based health information Look at ways to anonymize coding information in health data Learn the challenge of anonymously linking related datasets

Sharing Clinical Trial Data

Sharing Clinical Trial Data
  • Author : Institute of Medicine,Board on Health Sciences Policy,Committee on Strategies for Responsible Sharing of Clinical Trial Data
  • Publisher :Unknown
  • Release Date :2015-04-20
  • Total pages :304
  • ISBN : 0309316324
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Summary : Data sharing can accelerate new discoveries by avoiding duplicative trials, stimulating new ideas for research, and enabling the maximal scientific knowledge and benefits to be gained from the efforts of clinical trial participants and investigators. At the same time, sharing clinical trial data presents risks, burdens, and challenges. These include the need to protect the privacy and honor the consent of clinical trial participants; safeguard the legitimate economic interests of sponsors; and guard against invalid secondary analyses, which could undermine trust in clinical trials or otherwise harm public health. Sharing Clinical Trial Data presents activities and strategies for the responsible sharing of clinical trial data. With the goal of increasing scientific knowledge to lead to better therapies for patients, this book identifies guiding principles and makes recommendations to maximize the benefits and minimize risks. This report offers guidance on the types of clinical trial data available at different points in the process, the points in the process at which each type of data should be shared, methods for sharing data, what groups should have access to data, and future knowledge and infrastructure needs. Responsible sharing of clinical trial data will allow other investigators to replicate published findings and carry out additional analyses, strengthen the evidence base for regulatory and clinical decisions, and increase the scientific knowledge gained from investments by the funders of clinical trials. The recommendations of Sharing Clinical Trial Data will be useful both now and well into the future as improved sharing of data leads to a stronger evidence base for treatment. This book will be of interest to stakeholders across the spectrum of research--from funders, to researchers, to journals, to physicians, and ultimately, to patients.

Sharing Clinical Trial Data

Sharing Clinical Trial Data
  • Author : Institute of Medicine,Board on Health Sciences Policy,Committee on Strategies for Responsible Sharing of Clinical Trial Data
  • Publisher :Unknown
  • Release Date :2015-04-20
  • Total pages :304
  • ISBN : 0309316324
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Summary : Data sharing can accelerate new discoveries by avoiding duplicative trials, stimulating new ideas for research, and enabling the maximal scientific knowledge and benefits to be gained from the efforts of clinical trial participants and investigators. At the same time, sharing clinical trial data presents risks, burdens, and challenges. These include the need to protect the privacy and honor the consent of clinical trial participants; safeguard the legitimate economic interests of sponsors; and guard against invalid secondary analyses, which could undermine trust in clinical trials or otherwise harm public health. Sharing Clinical Trial Data presents activities and strategies for the responsible sharing of clinical trial data. With the goal of increasing scientific knowledge to lead to better therapies for patients, this book identifies guiding principles and makes recommendations to maximize the benefits and minimize risks. This report offers guidance on the types of clinical trial data available at different points in the process, the points in the process at which each type of data should be shared, methods for sharing data, what groups should have access to data, and future knowledge and infrastructure needs. Responsible sharing of clinical trial data will allow other investigators to replicate published findings and carry out additional analyses, strengthen the evidence base for regulatory and clinical decisions, and increase the scientific knowledge gained from investments by the funders of clinical trials. The recommendations of Sharing Clinical Trial Data will be useful both now and well into the future as improved sharing of data leads to a stronger evidence base for treatment. This book will be of interest to stakeholders across the spectrum of research--from funders, to researchers, to journals, to physicians, and ultimately, to patients.

Biomarker Tests for Molecularly Targeted Therapies

Biomarker Tests for Molecularly Targeted Therapies
  • Author : National Academies of Sciences, Engineering, and Medicine,Institute of Medicine,Board on Health Care Services,Committee on Policy Issues in the Clinical Development and Use of Biomarkers for Molecularly Targeted Therapies
  • Publisher :Unknown
  • Release Date :2016-07-30
  • Total pages :292
  • ISBN : 0309381347
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Summary : Every patient is unique, and the evolving field of precision medicine aims to ensure the delivery of the right treatment to the right patient at the right time. In an era of rapid advances in biomedicine and enhanced understanding of the genetic basis of disease, health care providers increasingly have access to advanced technologies that may identify molecular variations specific to an individual patient, which subsequently can be targeted for treatment. Known as biomarker tests for molecularly targeted therapies, these complex tests have the potential to enable the selection of the most beneficial treatment (and also to identify treatments that may be harmful or ineffective) for the molecular underpinnings of an individual patient's disease. Such tests are key to unlocking the promise of precision medicine. Biomarker tests for molecularly targeted therapies represent a crucial area of focus for developing methods that could later be applicable to other areas of precision medicine. The appropriate regulatory oversight of these tests is required to ensure that they are accurate, reliable, properly validated, and appropriately implemented in clinical practice. Moreover, common evidentiary standards for assessing the beneficial impact of biomarker-guided therapy selection on patient outcomes, as well as the effective collection and sharing of information related to those outcomes, are urgently needed to better inform clinical decision making. Biomarker Tests of Molecularly Targeted Therapies examines opportunities for and challenges to the use of biomarker tests to select optimal therapy and offers recommendations to accelerate progress in this field. This report explores regulatory issues, reimbursement issues, and clinical practice issues related to the clinical development and use of biomarker tests for targeting therapies to patients. Properly validated, appropriately implemented biomarker tests hold the potential to enhance patient care and improve outcomes, and therefore addressing the challenges facing such tests is critical.