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Secondary Findings in Genomic Research

Secondary Findings in Genomic Research
  • Author : Kyle B. Brothers
  • Publisher :Unknown
  • Release Date :2020-05
  • Total pages :312
  • ISBN : 9780128165492
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Summary : 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

Secondary Findings in Genomic Research

Secondary Findings in Genomic Research
  • Author : Anonim
  • Publisher :Unknown
  • Release Date :2020-02-29
  • Total pages :244
  • ISBN : 9780128167489
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Summary : 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

Clinical Genome Sequencing

Clinical Genome Sequencing
  • Author : Aad Tibben,Barbara B. Biesecker
  • Publisher :Unknown
  • Release Date :2019-03-30
  • Total pages :258
  • ISBN : 9780128133361
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Summary : 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. Features contributions from leading international researchers and practitioners versed in the psychosocial dimensions of genomic medicine implementation Presents clinical case studies that support concept illustration, making this an invaluable reference for students, researchers, and clinicians looking for practical guidance in this important and multifaceted topic area Details the current state of genomic testing, expectations of genome sequencing, patient consent, patient responses to sequencing data, uncertainties in genome sequencing, direct-to-consumer genome sequencing, and more

Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies

Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies
  • Author : Sorin Hostiuc
  • Publisher :Unknown
  • Release Date :2018-08-07
  • Total pages :431
  • ISBN : 9780128137659
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Summary : Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies offers thorough discussions on preconception carrier screening, genetic engineering and the use of CRISPR gene editing, mitochondrial gene replacement therapy, sex selection, predictive testing, secondary findings, embryo reduction and the moral status of the embryo, genetic enhancement, and the sharing of genetic data. Chapter contributions from leading bioethicists and clinicians encourage a global, holistic perspective on applied challenges and the moral questions relating the implementation of genetic reproductive technology. The book is an ideal resource for practitioners, regulators, lawmakers, clinical researchers, genetic counselors and graduate and medical students. As the Human Genome Project has triggered a technological revolution that has influenced nearly every field of medicine, including reproductive medicine, obstetrics, gynecology, andrology, prenatal genetic testing, and gene therapy, this book presents a timely resource. Provides practical analysis of the ethical issues raised by cutting-edge techniques and recent advances in prenatal and reproductive genetics Contains contributions from leading bioethicists and clinicians who offer a global, holistic perspective on applied challenges and moral questions relating to genetic and genomic reproductive technology Discusses preconception carrier screening, genetic engineering and the use of CRISPR gene editing, mitochondrial gene replacement therapy, ethical issues, and more

Returning Individual Research Results to Participants

Returning Individual Research Results to Participants
  • Author : National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Health Sciences Policy,Committee on the Return of Individual-Specific Research Results Generated in Research Laboratories
  • Publisher :Unknown
  • Release Date :2018-09-23
  • Total pages :398
  • ISBN : 9780309475174
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Summary : 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.

Informed Consent

Informed Consent
  • Author : Jessica W. Berg,Paul S. Appelbaum,Charles W. Lidz,Lisa S. Parker
  • Publisher :Unknown
  • Release Date :2001-07-12
  • Total pages :352
  • ISBN : 0199747784
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Summary : Informed consent - as an ethical ideal and legal doctrine - has been the source of much concern to clinicians. Drawing on a diverse set of backgrounds and two decades of research in clinical settings, the authors - a lawyer, a physician, a social scientist, and a philosopher - help clinicians understand and cope with their legal obligations and show how the proper handling of informed consent can improve , rather than impede, patient care. Following a concise review of the ethical and legal foundations of informed consent, they provide detailed, practical suggestions for incorporating informed consent into clinical practice. This completely revised and updated edition discusses how to handle informed consent in all phases of the doctor-patient relationship, use of consent forms, patients' refusals of treatment, and consent to research. It comments on recent laws and national policy, and addresses cutting edge issues, such as fulfilling physician obligations under managed care. This clear and succinct book contains a wealth of information that will not only help clinicians meet the legal requirements of informed consent and understand its ethical underpinnings, but also enhance their ability to deal with their patients more effectively. It will be of value to all those working in areas where issues of informed consent are likely to arise, including medicine, biomedical research, mental health care, nursing, dentistry, biomedical ethics, and law.

Medical and Health Genomics

Medical and Health Genomics
  • Author : Dhavendra Kumar,Stylianos Antonarakis
  • Publisher :Unknown
  • Release Date :2016-06-04
  • Total pages :358
  • ISBN : 9780127999227
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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

Anticipate and Communicate

Anticipate and Communicate
  • Author : Presidential Commission for the Study of Bioethical Issues,The Presidential Commission for the Stud
  • Publisher :Unknown
  • Release Date :2015-03-11
  • Total pages :156
  • ISBN : 1508807647
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Summary : 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.

The Oxford Handbook of Public Health Ethics

The Oxford Handbook of Public Health Ethics
  • Author : Anna C. Mastroianni,Jeffrey P. Kahn,Nancy E. Kass
  • Publisher :Unknown
  • Release Date :2019-07-23
  • Total pages :992
  • ISBN : 9780190933197
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Summary : Natural disasters and cholera outbreaks. Ebola, SARS, and concerns over pandemic flu. HIV and AIDS. E. coli outbreaks from contaminated produce and fast foods. Threats of bioterrorism. Contamination of compounded drugs. Vaccination refusals and outbreaks of preventable diseases. These are just some of the headlines from the last 30-plus years highlighting the essential roles and responsibilities of public health, all of which come with ethical issues and the responsibilities they create. Public health has achieved extraordinary successes. And yet these successes also bring with them ethical tension. Not all public health successes are equally distributed in the population; extraordinary health disparities between rich and poor still exist. The most successful public health programs sometimes rely on policies that, while improving public health conditions, also limit individual rights. Public health practitioners and policymakers face these and other questions of ethics routinely in their work, and they must navigate their sometimes competing responsibilities to the health of the public with other important societal values such as privacy, autonomy, and prevailing cultural norms. This Oxford Handbook provides a sweeping and comprehensive review of the current state of public health ethics, addressing these and numerous other questions. Taking account of the wide range of topics under the umbrella of public health and the ethical issues raised by them, this volume is organized into fifteen sections. It begins with two sections that discuss the conceptual foundations, ethical tensions, and ethical frameworks of and for public health and how public health does its work. The thirteen sections that follow examine the application of public health ethics considerations and approaches across a broad range of public health topics. While chapters are organized into topical sections, each chapter is designed to serve as a standalone contribution. The book includes 73 chapters covering many topics from varying perspectives, a recognition of the diversity of the issues that define public health ethics in the U.S. and globally. This Handbook is an authoritative and indispensable guide to the state of public health ethics today.

Pediatric Bioethics

Pediatric Bioethics
  • Author : Geoffrey Miller
  • Publisher :Unknown
  • Release Date :2010
  • Total pages :289
  • ISBN : 9780521517980
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Summary : This volume offers a theoretical and practical overview of the ethics of pediatric medicine. It serves as a fundamental handbook and resource for pediatricians, nurses, residents in training, graduate students, and practitioners of ethics and healthcare policy. Written by a team of leading experts, Pediatric Bioethics addresses those difficult ethical questions concerning the clinical and academic practice of pediatrics, including an approach to recognizing boundaries when confronted with issues such as end of life care, life-sustaining treatment, extreme prematurity, pharmacotherapy, and research. Thorny topics such as what constitutes best interests, personhood, or distributive justice and public health concerns such as immunization and newborn genetic screening are also addressed.

Genomic and Personalized Medicine

Genomic and Personalized Medicine
  • Author : Anonim
  • Publisher :Unknown
  • Release Date :2012-10-30
  • Total pages :1350
  • ISBN : 9780123822284
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Summary : 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

Genomic Applications in Pathology

Genomic Applications in Pathology
  • Author : George Jabboure Netto,Iris Schrijver
  • Publisher :Unknown
  • Release Date :2014-09-16
  • Total pages :622
  • ISBN : 9781493907274
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Summary : Genomic Applications in Pathology provides a state-of-the art review of the scientific principles underlying next generation genomic technologies and the required bioinformatics approaches to analyses of the daunting amount of data generated by current and emerging genomic technologies. Implementation roadmaps for various clinical assays such as single gene, gene panels, whole exome and whole genome assays are discussed together with issues related to reporting, including the pathologist’s role in interpretation and clinical integration of genomic tests results. Genomic applications for site-specific solid tumors and hematologic neoplasms are detailed, as well as genomic applications in pharmacogenomics, inherited genetic diseases, and infectious diseases. The latest iteration of practice recommendations and guidelines in genomic testing, put forth by stakeholder professional organizations such as the Association for Molecular Pathology and the College of American Pathologists, are also discussed in the volume, as well as regulatory issues and laboratory accreditation related to genomic testing. Written by experts in the field, Genomic Applications in Pathology provides a comprehensive resource that is of great value to practicing molecular pathologists, hematopathologists, other subspecialized pathologists, general pathologists, pathology trainees, oncologists, and geneticists.​

Plant Specialized Metabolism

Plant Specialized Metabolism
  • Author : Gen-ichiro Arimura,Massimo Maffei
  • Publisher :Unknown
  • Release Date :2016-10-26
  • Total pages :376
  • ISBN : 9781315353371
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Summary : Recent advances in science have clarified the role of plant specialized metabolites (classically known as plant secondary metabolites), which cannot be considered only bioactive molecules used for human health but also pivotal factors for the global ecosystem. They play major roles in plant life, evolution, and mutualism. To provide the reader a general view of plant specialized metabolites, it is important to consider both the biochemistry and the functional/ecological role of these important compounds. Around 200,000 specialized metabolites are formed by a wide array of plant metabolic pathways from numerous plant taxa and through learning how other species (including human beings) rely on them. Plant Specialized Metabolism: Genomics, Biochemistry, and Biological Functions will provide the reader with special insights into the sophisticated nature of these metabolites and their various and valuable uses based on the most recent findings in science. The field of plant specialized metabolism has witnessed tremendous growth in the past decade. This growth has had a profound impact on multiple disciplines in life science, including biochemistry, metabolism, enzymology, natural product chemistry, medicinal chemistry, chemical ecology, and evolution. It also has yielded valuable knowledge and technology readily applicable in various industries, such as agriculture, horticulture, energy, renewable chemicals, and pharmaceuticals. The book focuses on the molecular background of secondary metabolite biosynthesis, their functional role, and potential applications.

Clinical Genomics

Clinical Genomics
  • Author : Shashikant Kulkarni,John Pfeifer
  • Publisher :Unknown
  • Release Date :2014-11-10
  • Total pages :488
  • ISBN : 9780124051737
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Summary : Clinical Genomics provides an overview of the various next-generation sequencing (NGS) technologies that are currently used in clinical diagnostic laboratories. It presents key bioinformatic challenges and the solutions that must be addressed by clinical genomicists and genomic pathologists, such as specific pipelines for identification of the full range of variants that are clinically important. This book is also focused on the challenges of diagnostic interpretation of NGS results in a clinical setting. Its final sections are devoted to the emerging regulatory issues that will govern clinical use of NGS, and reimbursement paradigms that will affect the way in which laboratory professionals get paid for the testing. Simplifies complexities of NGS technologies for rapid education of clinical genomicists and genomic pathologists towards genomic medicine paradigm Tried and tested practice-based analysis for precision diagnosis and treatment plans Specific pipelines and meta-analysis for full range of clinically important variants

The Parathyroids

The Parathyroids
  • Author : John P. Bilezikian, MD,Robert Marcus, MD,Michael A. Levine
  • Publisher :Unknown
  • Release Date :2001-06-27
  • Total pages :881
  • ISBN : 0120986515
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Summary : Written by world experts, this books follows upon the monumental success of the first edition of The Parathyroids, which was universally acclaimed as the best text on the subject. An authoritative reference that spans the basic science of parathyroid hormone treatment to major clinical disorders in a superb, single compendium, The Parathyroids offers an objective and authoritative view on controversial clinical issues in this rapidly changing field. Every medical school library and virtually every major hospital library will need this book as a reference for students and clinicians. Key Features * Offers objective and authoritative reviews on controversial clinical issues * Written by world experts on parathyroid hormone and its disorders * Superb, state-of-the-art compendium in one convenient volume * Bridges basic science of parathyroid hormone to major clinical disorders * Practical information on clinical management of parathyroid hormone disorders

Pediatric Epidemiology

Pediatric Epidemiology
  • Author : W. Kiess,C.-G. Bornehag,C. Gennings
  • Publisher :Unknown
  • Release Date :2017-11-27
  • Total pages :156
  • ISBN : 9783318061239
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Summary : Pediatric epidemiology differs substantially from general epidemiology especially when it comes to ethical, developmental and societal aspects. This unique book addresses biological considerations and ethical and legal questions in dealing with pediatric and adolescent populations. Classic topics, such as how to recruit representative samples, how to deal with confounding variables, and how to work with genetic information are the core areas of the book are also in focus. Last but not the least, this volume adds to the current understanding of global trends in occurrence, transmission, and control of epidemic pediatric diseases. This book not only serves as a textbook for epidemiologists, pediatricians, geneticists, and child and public health specialists but is also a key reference for those embarking on pediatric cohort studies and epidemiological studies involving the pediatric population.

Congenital Anomalies

Congenital Anomalies
  • Author : Stefania Tudorache
  • Publisher :Unknown
  • Release Date :2018-05-02
  • Total pages :544
  • ISBN : 9781789231144
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Summary : Nowadays, nobody can imagine practicing obstetrics without using obstetrical ultrasound. Working in the prenatal diagnosis field requires dedication, patience, skills, experience, caution, and empathy. The concept of this book was guided by the desire to provide some help to the ultrasound operators. On a daily basis, they are confronted with the challenging task of ruling out or suspecting/confirming the diagnosis of fetal anomalies, either structural or chromosomal. The chapters of this book contain objective and exhaustive updated reviews of the pertinent literature, so that the reader would have a wide reference basis on each subject. Yet, many authors scan the fetus themselves or are directly involved with managing pregnancies with structural malformations or chromosomal anomalies. They kindly shared their personal experience and lessons learned over the years. This book is beneficial for all the professionals working in the prenatal diagnosis.

Tri-Council Policy Statement

Tri-Council Policy Statement
  • Author : Anonim
  • Publisher :Unknown
  • Release Date :2018
  • Total pages :202
  • ISBN : 0660299429
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Summary : "The Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS or the Policy) is a joint policy of Canada's three federal research agencies - the Canadian Institutes of Health Research (CIHR), the Natural Sciences and Engineering Research Council of Canada (NSERC), and the Social Sciences and Humanities Research Council (SSHRC), or "the Agencies." This Policy expresses the Agencies' continuing commitment to the people of Canada to promote the ethical conduct of research involving humans. It has been informed, in part, by leading international ethics norms, all of which may help, in some measure, to guide Canadian researchers, in Canada and abroad, in the conduct of research involving humans"--Introduction, page 3.

Genetic Engineering of Plant Secondary Metabolism

Genetic Engineering of Plant Secondary Metabolism
  • Author : Brian E. Ellis,Gary W. Kuroki,Helen A. Stafford
  • Publisher :Unknown
  • Release Date :2012-12-06
  • Total pages :368
  • ISBN : 9781461525448
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Summary : In this volume of Recent Advances in Phytochmistry you will find a record of the pioneering attempts of plant biochemists and molecular biologists to modify the patterns of secondary metabolism in plants, as presented at the 33rd annual meeting of the Phytochemical Society of North America, in Asilomar, California, on June 27 -July I, 1993. The studies described here represent a marriage of the newest of technologies with one of the oldest human activities, exploitation of plant chemistry. They also represent the beginning of a new era of phytochemical research, an era that will undoubtedly begin to provide answers to some of the long-standing questions that have absorbed plant biochemists for the past century. There is, for instance, a common deflating experience to which every worker in the area of plant secondary metabolism can probably relate. After hearing about the latest research findings regarding some aspect of remarkable compound "X", someone in the audience finally directs the inevitable question at the hapless speaker. "Tell me, is anything known as to the biological role of compound "X" in the plant?" The answer, in most cases, must be "essentially nothing"! This is a frustrating scenario for both the speaker and the audience, since the very fact that a complex biosynthetic pathway remains encoded in a plant genome points to an associated selective advantage. The problem is that establishing the nature and scale of that advantage is a very complex task.

Incidental Findings

Incidental Findings
  • Author : Danielle Ofri
  • Publisher :Unknown
  • Release Date :2005
  • Total pages :181
  • ISBN : 0807072672
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Summary : Ofri has finished her training as a physician and is learning through practice to become a more rounded healer. The book opens with the tables turned: Ofri has to enter her own hospital as a patient. She experiences the very real sense of invasion and panic that routinely visits her patients. These fifteen intertwined tales include that of a man who has lost the will to live, and she too comes dangerously close to concluding that he has nothing to live for; patient whose difficult decision to have an abortion highlights the vulnerabilities of doctor and patient alike; a patient whose physical and emotional abuse she can't possibly heal, so she must settle on treating the least of her patient's problems; and a concluding chapter in which Dr. Ofri's touch is the last in a woman's long life.

Bioethics and Public Health Law

Bioethics and Public Health Law
  • Author : Mary Anne Bobinski,David Orentlicher,I. Glenn Cohen,Mark A. Hall
  • Publisher :Unknown
  • Release Date :2018-05-11
  • Total pages :818
  • ISBN : 9781454890416
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Summary : Financial and ethical issues are integrated into this concise and engaging treatment of Bioethics and Public Health Law. The complex relationship between patients, providers, the state, and public health institutions are explored through high-interest cases, informative notes, and compelling problems. The updated Fourth Edition includes recent cases and developments in biotechnology, including stem cell research and gene patents, and updates to HIPPA coverage, DNA research, and bio-banks. Discussions of confidentiality and informed consent include new legislative and judicial responses to posthumous reproduction and the challenges arising from international reproductive tourism.