Privacy Issues in Biomedical and Clinical Research

Privacy Issues in Biomedical and Clinical Research PDF

Author: National Research Council

Publisher: National Academies Press

Published: 1998-12-10

Total Pages: 59

ISBN-13: 0309063280

DOWNLOAD EBOOK →

After discussions with the National Cancer Institute and the Department of Energy the Board on Biology of the National Research Council agreed to run a workshop under the auspices of its Forum on Biotechnology entitled "Privacy Issues in Biomedical and Clinical Research" on November 1, 1997. The organizers want to stress the forum was not intended to cover the full gauntlet of issues concerning Genomics and the Privacy of Medical Records. The emphasis of this forum was to look at pending legislation in Congress (Fall, 1997) and consider, if enacted as written, how this would affect genetic research. The broad language of this legislation written to protect the individual could inadvertently restrict research intended to help these same individuals. Scientific progress requires the sharing of information for the validation of results and the dissemination of gained knowledge to be effective. Other issues which were touched upon in this forum but not fully explored include; the trust of individuals involved in genetic studies in the manner their genetic information could be used, the practice of the generalized "linking" of particular ethnic groups with specific genetic traits, and the potential for positive and negative impact on the quality of life by having knowledge of one's genetic potential. These and other issues which have come upon us in the age of genomics require separate, focused efforts to explore their potential effect on society.

Assessing Genetic Risks

Assessing Genetic Risks PDF

Author: Institute of Medicine

Publisher: National Academies Press

Published: 1994-01-01

Total Pages: 353

ISBN-13: 0309047986

DOWNLOAD EBOOK →

Raising hopes for disease treatment and prevention, but also the specter of discrimination and "designer genes," genetic testing is potentially one of the most socially explosive developments of our time. This book presents a current assessment of this rapidly evolving field, offering principles for actions and research and recommendations on key issues in genetic testing and screening. Advantages of early genetic knowledge are balanced with issues associated with such knowledge: availability of treatment, privacy and discrimination, personal decision-making, public health objectives, cost, and more. Among the important issues covered: Quality control in genetic testing. Appropriate roles for public agencies, private health practitioners, and laboratories. Value-neutral education and counseling for persons considering testing. Use of test results in insurance, employment, and other settings.

Exploding the Gene Myth

Exploding the Gene Myth PDF

Author: Ruth Hubbard

Publisher: Beacon Press

Published: 1999-05-01

Total Pages: 260

ISBN-13: 9780807004319

DOWNLOAD EBOOK →

How Genetic Information Is Produced and Manipulated by Scientists, Physicians, Employers, Insurance Companies, Educators, and Law Enforcers

An Introduction to Statistical Genetic Data Analysis

An Introduction to Statistical Genetic Data Analysis PDF

Author: Melinda C. Mills

Publisher: MIT Press

Published: 2020-02-18

Total Pages: 433

ISBN-13: 0262357445

DOWNLOAD EBOOK →

A comprehensive introduction to modern applied statistical genetic data analysis, accessible to those without a background in molecular biology or genetics. Human genetic research is now relevant beyond biology, epidemiology, and the medical sciences, with applications in such fields as psychology, psychiatry, statistics, demography, sociology, and economics. With advances in computing power, the availability of data, and new techniques, it is now possible to integrate large-scale molecular genetic information into research across a broad range of topics. This book offers the first comprehensive introduction to modern applied statistical genetic data analysis that covers theory, data preparation, and analysis of molecular genetic data, with hands-on computer exercises. It is accessible to students and researchers in any empirically oriented medical, biological, or social science discipline; a background in molecular biology or genetics is not required. The book first provides foundations for statistical genetic data analysis, including a survey of fundamental concepts, primers on statistics and human evolution, and an introduction to polygenic scores. It then covers the practicalities of working with genetic data, discussing such topics as analytical challenges and data management. Finally, the book presents applications and advanced topics, including polygenic score and gene-environment interaction applications, Mendelian Randomization and instrumental variables, and ethical issues. The software and data used in the book are freely available and can be found on the book's website.

Exploring Diversity and Discrimination

Exploring Diversity and Discrimination PDF

Author: Abigail Perdue

Publisher:

Published: 2021

Total Pages:

ISBN-13: 9781531002763

DOWNLOAD EBOOK →

"America is undergoing an intense cultural evolution. Recently, race, sex, and other relations have been incredibly strained, and communities, both urban and rural, have experienced social turbulence, which at times, has erupted into violence. These issues are surfacing at campuses across America. But what underlying factors account for these recurring eruptions of prejudice, discrimination, violence, and hate? And perhaps more importantly, what, if anything, can we, as educators, do to prevent prejudice, promote empathy and understanding, and empower our students to compassionately and thoughtfully navigate these turbulent times? Grappling with these difficult but important questions inspired Exploring Diversity and Discrimination: Sex, Disability, and Genetic Information. The book aims to encourage educators to teach inclusive courses about diversity and discrimination at their respective institutions, and that these courses will provide opportunities for compassionate engagement and meaningful dialogue among people from different backgrounds. Although one book is certainly not an all-inclusive solution, it is a step in the right direction. After all, relations between different groups may continue to deteriorate unless we, as educators, provide more opportunities for meaningful, open, and honest dialogue about these issues and facilitate compassionate engagement with people who differ from us. Such exposure can foster empathy as can education and understanding. With this purpose in mind, the book explores the sociological underpinnings and legal regulation of diversity and discrimination in the United States, primarily through the lens of my areas of scholarly interest and practical expertise: sex discrimination, disability discrimination, and discrimination on the basis of genetic information"--

Genetic Secrets

Genetic Secrets PDF

Author: Mark A. Rothstein

Publisher: Yale University Press

Published: 1997-01-01

Total Pages: 532

ISBN-13: 9780300080636

DOWNLOAD EBOOK →

The dramatic explosion of information brought about by recent advances in genetic research brings welcome scientific knowledge. Yet this new knowledge also raises complex and troubling issues concerning privacy and confidentiality. This thought-provoking book is the first comprehensive exploration of these ethical, legal, and social issues. Distinguished experts in law, medicine, bioethics, public health, science policy, clinical genetics, philosophy, and other fields consider the many contexts in which issues of genetic privacy arise--from research and clinical settings to workplaces, insurance offices, schools, and the courts. The first chapters of this book set out a framework for analyzing genetic privacy and confidentiality, comparing genetic privacy with other forms of medical privacy. Later chapters deal with such topics as concerns that arise in the health care setting (the patient-physician relationship, genetic counseling and privacy); the effect of new technology (the role of commercial genomics, forensic DNA applications); nonmedical uses of genetic information (the law of medical and genetic privacy in the workplace, implications of genetic testing for health and life insurance); and a review of ethics and law in the United States and abroad. In the concluding chapter, Mark A. Rothstein discusses flaws in existing and proposed legislation designed to protect genetic privacy and confidentiality, and he offers a new set of guidelines for policy makers.

Genetic Resources as Natural Information

Genetic Resources as Natural Information PDF

Author: Manuel Ruiz Muller

Publisher: Routledge

Published: 2015-09-16

Total Pages: 138

ISBN-13: 1317624165

DOWNLOAD EBOOK →

Demonstrating the shortcomings of current policy and legal approaches to access and benefit-sharing (ABS) in the Convention on Biological Diversity (CBD), this book recognizes that genetic resources are widely distributed across countries and that bilateral contracts undermine fairness and equity. The book offers a practical and feasible regulatory alternative to ensure the goal of fairness and equity is effectively and efficiently met. Through a legal analysis that also incorporates historic, economic and sociological perspectives, the book argues that genetic resources are not tangible resources but information. It shows that the existing preference for bilateralism and contracts reflects resistance on the part of many of the stakeholders involved in the CBD process to recognize them as such. ABS issues respond very well to the economics of information, yet as the author explains, these have been either sidelined or overlooked. At a time when the Nagoya Protocol on ABS has renewed interest in feasible policy options, the author provides a constructive and provocative critique. The institutional, policy and regulatory framework constitute "bounded openness" under which fairness and equity emerge.

The Gene

The Gene PDF

Author: Siddhartha Mukherjee

Publisher: Simon and Schuster

Published: 2016-05-17

Total Pages: 624

ISBN-13: 1476733538

DOWNLOAD EBOOK →

The #1 NEW YORK TIMES Bestseller The basis for the PBS Ken Burns Documentary The Gene: An Intimate History Now includes an excerpt from Siddhartha Mukherjee’s new book Song of the Cell! From the Pulitzer Prize–winning author of The Emperor of All Maladies—a fascinating history of the gene and “a magisterial account of how human minds have laboriously, ingeniously picked apart what makes us tick” (Elle). “Sid Mukherjee has the uncanny ability to bring together science, history, and the future in a way that is understandable and riveting, guiding us through both time and the mystery of life itself.” —Ken Burns “Dr. Siddhartha Mukherjee dazzled readers with his Pulitzer Prize-winning The Emperor of All Maladies in 2010. That achievement was evidently just a warm-up for his virtuoso performance in The Gene: An Intimate History, in which he braids science, history, and memoir into an epic with all the range and biblical thunder of Paradise Lost” (The New York Times). In this biography Mukherjee brings to life the quest to understand human heredity and its surprising influence on our lives, personalities, identities, fates, and choices. “Mukherjee expresses abstract intellectual ideas through emotional stories…[and] swaddles his medical rigor with rhapsodic tenderness, surprising vulnerability, and occasional flashes of pure poetry” (The Washington Post). Throughout, the story of Mukherjee’s own family—with its tragic and bewildering history of mental illness—reminds us of the questions that hang over our ability to translate the science of genetics from the laboratory to the real world. In riveting and dramatic prose, he describes the centuries of research and experimentation—from Aristotle and Pythagoras to Mendel and Darwin, from Boveri and Morgan to Crick, Watson and Franklin, all the way through the revolutionary twenty-first century innovators who mapped the human genome. “A fascinating and often sobering history of how humans came to understand the roles of genes in making us who we are—and what our manipulation of those genes might mean for our future” (Milwaukee Journal-Sentinel), The Gene is the revelatory and magisterial history of a scientific idea coming to life, the most crucial science of our time, intimately explained by a master. “The Gene is a book we all should read” (USA TODAY).

Heritable Human Genome Editing

Heritable Human Genome Editing PDF

Author: The Royal Society

Publisher: National Academies Press

Published: 2021-01-16

Total Pages: 239

ISBN-13: 0309671132

DOWNLOAD EBOOK →

Heritable human genome editing - making changes to the genetic material of eggs, sperm, or any cells that lead to their development, including the cells of early embryos, and establishing a pregnancy - raises not only scientific and medical considerations but also a host of ethical, moral, and societal issues. Human embryos whose genomes have been edited should not be used to create a pregnancy until it is established that precise genomic changes can be made reliably and without introducing undesired changes - criteria that have not yet been met, says Heritable Human Genome Editing. From an international commission of the U.S. National Academy of Medicine, U.S. National Academy of Sciences, and the U.K.'s Royal Society, the report considers potential benefits, harms, and uncertainties associated with genome editing technologies and defines a translational pathway from rigorous preclinical research to initial clinical uses, should a country decide to permit such uses. The report specifies stringent preclinical and clinical requirements for establishing safety and efficacy, and for undertaking long-term monitoring of outcomes. Extensive national and international dialogue is needed before any country decides whether to permit clinical use of this technology, according to the report, which identifies essential elements of national and international scientific governance and oversight.