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Secondary Findings In Genomic Research
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Book Synopsis Secondary Findings in Genomic Research by :
Download or read book Secondary Findings in Genomic Research written by and published by Academic Press. This book was released on 2020-03-18 with total page 244 pages. Available in PDF, EPUB and Kindle. Book excerpt: Secondary Findings in Genomic Research offers a single, highly accessible resource on interpreting, managing and disclosing secondary findings in genomic research. With chapters written by experts in the field, this book is the first to concisely explain the ethical and practical issues raised by secondary genomics findings for a multi and interdisciplinary audience of genomic researchers, translational scientists, clinicians, medical students, genetic counselors, ethicists, legal experts and law students, public policy specialists and regulators. Contributors from Europe, North America, and Asia effectively synthesize perspectives from a spectrum of different scientific, societal, and global contexts, and offer pragmatic approaches to a range of topics, including oversight, governance and policy surrounding secondary genomic results, criteria for identifying results for return, communication and consent, stakeholders' attitudes and perspectives, disclosing results, and clinical, patient-centered protocols. Thoroughly addresses the scientific, ethical, practical and clinical issues raised by secondary findings resulting from genomic research, including active debate and challenges in the field Provides researchers, clinicians, regulators, and stakeholders with a holistic, interdisciplinary approach to interpreting, managing and disclosing secondary findings Brings together expert analysis from scholars across Europe, North America, and Asia representing a wide variety of scientific and societal contexts
Book Synopsis Secondary Findings in Genomic Research by :
Download or read book Secondary Findings in Genomic Research written by and published by Academic Press. This book was released on 2020-02-29 with total page 246 pages. Available in PDF, EPUB and Kindle. Book excerpt: Secondary Findings in Genomic Research offers a single, highly accessible resource on interpreting, managing and disclosing secondary findings in genomic research. With chapters written by experts in the field, this book is the first to concisely explain the ethical and practical issues raised by secondary genomics findings for a multi and interdisciplinary audience of genomic researchers, translational scientists, clinicians, medical students, genetic counselors, ethicists, legal experts and law students, public policy specialists and regulators. Contributors from Europe, North America, and Asia effectively synthesize perspectives from a spectrum of different scientific, societal, and global contexts, and offer pragmatic approaches to a range of topics, including oversight, governance and policy surrounding secondary genomic results, criteria for identifying results for return, communication and consent, stakeholders’ attitudes and perspectives, disclosing results, and clinical, patient-centered protocols. Thoroughly addresses the scientific, ethical, practical and clinical issues raised by secondary findings resulting from genomic research, including active debate and challenges in the field Provides researchers, clinicians, regulators, and stakeholders with a holistic, interdisciplinary approach to interpreting, managing and disclosing secondary findings Brings together expert analysis from scholars across Europe, North America, and Asia representing a wide variety of scientific and societal contexts
Author :National Academies of Sciences, Engineering, and Medicine Publisher :National Academies Press ISBN 13 :0309475171 Total Pages :399 pages Book Rating :4.3/5 (94 download)
Book Synopsis Returning Individual Research Results to Participants by : National Academies of Sciences, Engineering, and Medicine
Download or read book Returning Individual Research Results to Participants written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2018-09-23 with total page 399 pages. Available in PDF, EPUB and Kindle. Book excerpt: When is it appropriate to return individual research results to participants? The immense interest in this question has been fostered by the growing movement toward greater transparency and participant engagement in the research enterprise. Yet, the risks of returning individual research resultsâ€"such as results with unknown validityâ€"and the associated burdens on the research enterprise are competing considerations. Returning Individual Research Results to Participants reviews the current evidence on the benefits, harms, and costs of returning individual research results, while also considering the ethical, social, operational, and regulatory aspects of the practice. This report includes 12 recommendations directed to various stakeholdersâ€"investigators, sponsors, research institutions, institutional review boards (IRBs), regulators, and participantsâ€"and are designed to help (1) support decision making regarding the return of results on a study-by-study basis, (2) promote high-quality individual research results, (3) foster participant understanding of individual research results, and (4) revise and harmonize current regulations.
Book Synopsis Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey by : National Research Council
Download or read book Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey written by National Research Council and published by National Academies Press. This book was released on 2014-09-08 with total page 149 pages. Available in PDF, EPUB and Kindle. Book excerpt: Population surveys traditionally collect information from respondents about their circumstances, behaviors, attitudes, and other characteristics. In recent years, many surveys have been collecting not only questionnaire answers, but also biologic specimens such as blood samples, saliva, and buccal swabs, from which a respondent's DNA can be ascertained along with other biomarkers (e.g., the level of a certain protein in the blood). The National Health and Nutrition Examination Survey (NHANES), sponsored by the National Center for Health Statistics (NCHS), has been collecting and storing genetic specimens since 1991, and other surveys, such as the Health and Retirement Study (HRS) funded by the National Institute on Aging, have followed suit. In order to give their informed consent to participate in a survey, respondents need to know the disposition and use of their data. Will their data be used for one research project and then destroyed, or will they be archived for secondary use? Sponsors of repeated cross-sectional surveys, such as NHANES, and of longitudinal surveys that follow panels of individuals over time, such as HRS, generally want to retain data for a wide range of secondary uses, many of which are not explicitly foreseen at the time of data collection. They typically inform respondents that their data will be stored in a secure manner and may be provided to researchers with suitable protections against individual identification. The addition of biologic specimens to a survey adds complications for storing, protecting, and providing access to such data and measurements made from them. There are also questions of whether, when, and for which biologic measurements the results should be reported back to individual respondents. Recently, the cost of full genomic sequencing has plummeted, and research findings are beginning to accumulate that bear up under replication and that potentially have clinical implications for a respondent. For example, knowing that one possesses a certain gene or gene sequence might suggest that one should seek a certain kind of treatment or genetic counseling or inform one's blood relatives. Biomedical research studies, in which participants are asked to donate tissues for genetic studies and are usually told that they will not be contacted with any results, are increasingly confronting the issue of when and which DNA results to return to participants. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey is the summary of a workshop convened in February 2013 by the Committee on National Statistics in the Division of Behavioral and Social Sciences and Education of the National Research Council. This report considers how population surveys, in particular NHANES, should implement the reporting of results from genomic research using stored specimens and address informed consent for future data collection as well as for the use of banked specimens covered by prior informed consent agreements. The report will be of interest to survey organizations that include or contemplate including the collection of biologic specimens in population surveys for storing for genetic research. The issues involved are important for advancing social, behavioral, and biomedical knowledge while appropriately respecting and protecting individual survey respondents.
Download or read book Genetic Screening written by and published by National Academies. This book was released on 1975-01-01 with total page 416 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Book Synopsis Clinical Genome Sequencing by : Aad Tibben
Download or read book Clinical Genome Sequencing written by Aad Tibben and published by Academic Press. This book was released on 2019-04-03 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: Clinical Genome Sequencing: Psychological Aspects thoroughly details key psychological factors to consider while implementing genome sequencing in clinical practice, taking into account the subtleties of genetic risk assessment, patient consent and best practices for sharing genomic findings. Chapter contributions from leading international researchers and practitioners cover topics ranging from the current state of genomic testing, to patient consent, patient responses to sequencing data, common uncertainties, direct-to-consumer genomics, the role of genome sequencing in precision medicine, genetic counseling and genome sequencing, genome sequencing in pediatrics, genome sequencing in prenatal testing, and ethical issues in genome sequencing. Applied clinical case studies support concept illustration, making this an invaluable, practical reference for this important and multifaceted topic area within genomic medicine.
Book Synopsis Assessing Genomic Sequencing Information for Health Care Decision Making by : Institute of Medicine
Download or read book Assessing Genomic Sequencing Information for Health Care Decision Making written by Institute of Medicine and published by National Academies Press. This book was released on 2014-08-19 with total page 104 pages. Available in PDF, EPUB and Kindle. Book excerpt: Rapid advances in technology have lowered the cost of sequencing an individual's genome from the several billion dollars that it cost a decade ago to just a few thousand dollars today and have correspondingly greatly expanded the use of genomic information in medicine. Because of the lack of evidence available for assessing variants, evaluation bodies have made only a few recommendations for the use of genetic tests in health care. For example, organizations, such as the Evaluation of Genomic Applications in Practice and Prevention working group, have sought to set standards for the kinds of evaluations needed to make population-level health decisions. However, due to insufficient evidence, it has been challenging to recommend the use of a genetic test. An additional challenge to using large-scale sequencing in the clinic is that it may uncover "secondary," or "incidental," findings - genetic variants that have been associated with a disease but that are not necessarily related to the conditions that led to the decision to use genomic testing. Furthermore, as more genetic variants are associated with diseases, new information becomes available about genomic tests performed previously, which raises issues about how and whether to return this information to physicians and patients and also about who is responsible for the information. To help develop a better understanding of how genomic information is used for healthcare decision making, the Roundtable on Translating Genomic-Based Research for Health of the Institute of Medicine held a workshop in Washington,DC in February 2014. Stakeholders, including clinicians, researchers, patients, and government officials, discussed the issues related to the use of genomic information in medical practice. Assessing Genomic Sequencing Information for Health Care Decision Making is the summary of that workshop. This report compares and contrasts evidence evaluation processes for different clinical indications and discusses key challenges in the evidence evaluation process.
Book Synopsis Research Involving Human Biological Materials by : United States. National Bioethics Advisory Commission
Download or read book Research Involving Human Biological Materials written by United States. National Bioethics Advisory Commission and published by . This book was released on 1999 with total page 18 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Book Synopsis American Jewish Year Book 2012 by : Arnold Dashefsky
Download or read book American Jewish Year Book 2012 written by Arnold Dashefsky and published by Springer Science & Business Media. This book was released on 2012-12-09 with total page 609 pages. Available in PDF, EPUB and Kindle. Book excerpt: The 2012 American Jewish Year Book, “The Annual Record of American Jewish Civilization,” contains major chapters on Jewish secularism (Barry Kosmin and Ariela Keysar), Canadian Jewry (Morton Weinfeld, David Koffman, and Randal Schnoor), national affairs (Ethan Felson), Jewish communal affairs (Lawrence Grossman), Jewish population in the United States (Ira Sheskin and Arnold Dashefsky), and World Jewish population (Sergio DellaPergola). These chapters provide insight into major trends in the North American and world Jewish community. The volume also acts as a resource for the American Jewish community and for academics studying that community by supplying obituaries and lists of Jewish Federations, Jewish Community Centers, national Jewish organizations, Jewish overnight camps, Jewish museums, Holocaust museums, local and national Jewish periodicals, Jewish honorees, major recent events in the American Jewish community, and academic journals, articles, websites, and books. The volume should prove useful to social scientists and historians of the American Jewish community, Jewish communal workers, the press, and others interested in American and Canadian Jews.
Book Synopsis Incidental Findings in Genomic Research by : Ma'n H. Zawati
Download or read book Incidental Findings in Genomic Research written by Ma'n H. Zawati and published by . This book was released on 2013 with total page 8 pages. Available in PDF, EPUB and Kindle. Book excerpt: Human genomic research will influence the practice of medicine by further exploring the vast potential of large-scale biobanks and associated pharmacogenomics and clinical research initiatives. While population studies of normal genomic variation may assist in understanding heterogeneity and allow for targeted therapies, researchers may well discover incidental findings - discoveries that go beyond the aims of the intended study - especially when using whole genome sequencing technologies. Policies as well as literature have dealt with the issue of managing these findings in research in general, but a review of international norms governing genomic research will give us a more comprehensive look at the state of the legal and ethical guidance.
Book Synopsis Genomics in Drug Discovery and Development by : Dimitri Semizarov
Download or read book Genomics in Drug Discovery and Development written by Dimitri Semizarov and published by John Wiley & Sons. This book was released on 2008-11-03 with total page 496 pages. Available in PDF, EPUB and Kindle. Book excerpt: Early characterization of toxicity and efficacy would significantly impact the overall productivity of pharmaceutical R&D and reduce drug candidate attrition and failure. By describing the available platforms and weighing their relative advantages and disadvantages, including microarray data analysis, Genomics in Drug Discovery and Development introduces readers to the biomarker, pharmacogenomic, and toxicogenomics toolbox. The authors provide a valuable resource for pharmaceutical discovery scientists, preclinical drug safety department personnel, regulatory personnel, discovery toxicologists, and safety scientists, drug development professionals, and pharmaceutical scientists.
Author :Presidential Commission for the Study of Bioethical Issues Publisher :CreateSpace ISBN 13 :9781508807643 Total Pages :156 pages Book Rating :4.8/5 (76 download)
Book Synopsis Anticipate and Communicate by : Presidential Commission for the Study of Bioethical Issues
Download or read book Anticipate and Communicate written by Presidential Commission for the Study of Bioethical Issues and published by CreateSpace. This book was released on 2015-03-11 with total page 156 pages. Available in PDF, EPUB and Kindle. Book excerpt: Anticipate and Communicate is the Bioethics Commission's sixth major report. In this report the Bioethics Commission offers specific recommendations for the management of incidental and secondary findings in clinical, research and direct-to-consumer settings. Emerging medical technologies, changing cost structures, and evolving medical practice make the likelihood of discovering incidental and secondary findings across contexts a growing certainty. Such findings can be lifesaving, but also can lead to uncertainty and distress if they are unexpected or identify conditions for which no effective treatment is available.
Book Synopsis A Guide to Genetic Counseling by : Wendy R. Uhlmann
Download or read book A Guide to Genetic Counseling written by Wendy R. Uhlmann and published by John Wiley & Sons. This book was released on 2011-09-20 with total page 644 pages. Available in PDF, EPUB and Kindle. Book excerpt: The first book devoted exclusively to the principles and practice of genetic counseling—now in a new edition First published in 1998, A Guide to Genetic Counseling quickly became a bestselling and widely recognized text, used nationally and internationally in genetic counseling training programs. Now in its eagerly anticipated Second Edition, it provides a thoroughly revised and comprehensive overview of genetic counseling, focusing on the components, theoretical framework, and unique approach to patient care that are the basis of this profession. The book defines the core competencies and covers the genetic counseling process from case initiation to completion—in addition to addressing global professional issues—with an emphasis on describing fundamental principles and practices. Chapters are written by leaders in the field of genetic counseling and are organized to facilitate academic instruction and skill attainment. They provide the most up-to-date coverage of: The history and practice of genetic counseling Family history Interviewing Case preparation and management Psychosocial counseling Patient education Risk communication and decision-making Medical genetics evaluation Understanding genetic testing Medical documentation Multicultural counseling Ethical and legal issues Student supervision Genetic counseling research Professional development Genetics education and outreach Evolving roles and expanding opportunities Case examples A Guide to Genetic Counseling, Second Edition belongs on the syllabi of all medical and human genetics and genetic counseling training programs. It is an indispensable reference for both students and healthcare professionals working with patients who have or are at risk for genetic conditions.
Book Synopsis Using Discrete Choice Experiments to Value Health and Health Care by : Mandy Ryan
Download or read book Using Discrete Choice Experiments to Value Health and Health Care written by Mandy Ryan and published by Springer Science & Business Media. This book was released on 2007-10-23 with total page 265 pages. Available in PDF, EPUB and Kindle. Book excerpt: This work takes a fresh and contemporary look at the growing interest in the development and application of discrete choice experiments (DCEs) within the field of health economics. The book comprises chapters by highly regarded academics with experience of applying DCEs in the area of health. Thus the book is relevant to post-graduate students and applied researchers with an interest in the use of DCEs for valuing health and health care and has international appeal.
Book Synopsis Making Sense of Genes by : Kostas Kampourakis
Download or read book Making Sense of Genes written by Kostas Kampourakis and published by Cambridge University Press. This book was released on 2017-03-30 with total page 319 pages. Available in PDF, EPUB and Kindle. Book excerpt: What are genes? What do genes do? These seemingly simple questions are in fact challenging to answer accurately. As a result, there are widespread misunderstandings and over-simplistic answers, which lead to common conceptions widely portrayed in the media, such as the existence of a gene 'for' a particular characteristic or disease. In reality, the DNA we inherit interacts continuously with the environment and functions differently as we age. What our parents hand down to us is just the beginning of our life story. This comprehensive book analyses and explains the gene concept, combining philosophical, historical, psychological and educational perspectives with current research in genetics and genomics. It summarises what we currently know and do not know about genes and the potential impact of genetics on all our lives. Making Sense of Genes is an accessible but rigorous introduction to contemporary genetics concepts for non-experts, undergraduate students, teachers and healthcare professionals.
Book Synopsis Genomic and Personalized Medicine by : Geoffrey S. Ginsburg
Download or read book Genomic and Personalized Medicine written by Geoffrey S. Ginsburg and published by Academic Press. This book was released on 2012-11-29 with total page 1343 pages. Available in PDF, EPUB and Kindle. Book excerpt: Genomic and Personalized Medicine, Second Edition - winner of a 2013 Highly Commended BMA Medical Book Award for Medicine - is a major discussion of the structure, history, and applications of the field, as it emerges from the campus and lab into clinical action. As with the first edition, leading experts review the development of the new science, the current opportunities for genome-based analysis in healthcare, and the potential of genomic medicine in future healthcare. The inclusion of the latest information on diagnostic testing, population screening, disease susceptability, and pharmacogenomics makes this work an ideal companion for the many stakeholders of genomic and personalized medicine. With advancing knowledge of the genome across and outside protein-coding regions of DNA, new comprehension of genomic variation and frequencies across populations, the elucidation of advanced strategic approaches to genomic study, and above all in the elaboration of next-generation sequencing, genomic medicine has begun to achieve the much-vaunted transformative health outcomes of the Human Genome Project, almost a decade after its official completion in April 2003. Highly Commended 2013 BMA Medical Book Award for Medicine More than 100 chapters, from leading researchers, review the many impacts of genomic discoveries in clinical action, including 63 chapters new to this edition Discusses state-of-the-art genome technologies, including population screening, novel diagnostics, and gene-based therapeutics Wide and inclusive discussion encompasses the formidable ethical, legal, regulatory and social challenges related to the evolving practice of genomic medicine Clearly and beautifully illustrated with 280 color figures, and many thousands of references for further reading and deeper analysis
Book Synopsis The Ethics of Research Biobanking by : Jan Helge Solbakk
Download or read book The Ethics of Research Biobanking written by Jan Helge Solbakk and published by Springer Science & Business Media. This book was released on 2009-07-31 with total page 361 pages. Available in PDF, EPUB and Kindle. Book excerpt: Biobanking, i.e. storage of biological samples or data emerging from such samples for diagnostic, therapeutic or research purposes, has been going on for decades. However, it is only since the mid 1990s that these activities have become the subject of considerable public attention, concern and debate. This shift in climate is due to several factors. The purpose of this book is to investigate some of the ethical, legal and social challenges raised by research biobanking in its different modern forms and formats. The issues raised by research biobanking in its modern form can be divided into four main clusters: how biological materials are entered into the bank; research biobanks as institutions; under what conditions researchers can access materials in the bank, and problems concerning ownership of biological materials and of intellectual property arising from such materials; and how the information is collected and stored, e.g. access-rights, disclosure, confidentiality, data security and data protection.
