The Genetic Information Nondiscrimination Act

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Direct-to-Consumer Genetic Testing

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Author : National Research Council
Publisher : National Academies Press
ISBN 13 : 0309162165
Total Pages : 106 pages
Book Rating : 4.3/5 (91 download)

Book Synopsis Direct-to-Consumer Genetic Testing by : National Research Council

Download or read book Direct-to-Consumer Genetic Testing written by National Research Council and published by National Academies Press. This book was released on 2011-01-16 with total page 106 pages. Available in PDF, EPUB and Kindle. Book excerpt: Today, scores of companies, primarily in the United States and Europe, are offering whole genome scanning services directly to the public. The proliferation of these companies and the services they offer demonstrate a public appetite for this information and where the future of genetics may be headed; they also demonstrate the need for serious discussion about the regulatory environment, patient privacy, and other policy implications of direct-to-consumer (DTC) genetic testing. Rapid advances in genetic research already have begun to transform clinical practice and our understanding of disease progression. Existing research has revealed a genetic basis or component for numerous diseases, including Parkinson's disease, Alzheimer's disease, diabetes, heart disease, and several forms of cancer. The availability of the human genome sequence and the HapMap, plummeting costs of high-throughput screening, and increasingly sophisticated computational analyses have led to an explosion of discoveries of linkages between patterns of genetic variation and disease susceptibility. While this research is by no means a straight path toward better public health, improved knowledge of the genetic linkages has the potential to change fundamentally the way health professionals and public health practitioners approach the prevention and treatment of disease. Realizing this potential will require greater sophistication in the interpretation of genetic tests, new training for physicians and other diagnosticians, and new approaches to communicating findings to the public. As this rapidly growing field matures, all of these questions require attention from a variety of perspectives. To discuss some of the foregoing issues, several units of the National Academies held a workshop on August 31 and September 1, 2009, to bring together a still-developing community of professionals from a variety of relevant disciplines, to educate the public and policy-makers about this emerging field, and to identify issues for future study. The meeting featured several invited presentations and discussions on the many technical, legal, policy, and ethical questions that such DTC testing raises, including: (1) overview of the current state of knowledge and the future research trajectory; (2) shared genes and emerging issues in privacy; (3) the regulatory framework; and (4) education of the public and the medical community.

Returning Individual Research Results to Participants

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Author : National Academies of Sciences, Engineering, and Medicine
Publisher : National Academies Press
ISBN 13 : 0309475201
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 2018-08-23 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.

Section 1557 of the Affordable Care Act

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Author : American Dental Association
Publisher : American Dental Association
ISBN 13 : 1941807712
Total Pages : 60 pages
Book Rating : 4.9/5 (418 download)

Book Synopsis Section 1557 of the Affordable Care Act by : American Dental Association

Download or read book Section 1557 of the Affordable Care Act written by American Dental Association and published by American Dental Association. This book was released on 2017-05-24 with total page 60 pages. Available in PDF, EPUB and Kindle. Book excerpt: Section 1557 is the nondiscrimination provision of the Affordable Care Act (ACA). This brief guide explains Section 1557 in more detail and what your practice needs to do to meet the requirements of this federal law. Includes sample notices of nondiscrimination, as well as taglines translated for the top 15 languages by state.

Am I My Genes?

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Author : Robert L. Klitzman M.D.
Publisher : Oxford University Press
ISBN 13 : 0190207671
Total Pages : 376 pages
Book Rating : 4.1/5 (92 download)

Book Synopsis Am I My Genes? by : Robert L. Klitzman M.D.

Download or read book Am I My Genes? written by Robert L. Klitzman M.D. and published by Oxford University Press. This book was released on 2012-03-01 with total page 376 pages. Available in PDF, EPUB and Kindle. Book excerpt: In the fifty years since DNA was discovered, we have seen extraordinary advances. For example, genetic testing has rapidly improved the diagnosis and treatment of diseases such as Huntington's, cystic fibrosis, breast cancer, and Alzheimer's. But with this new knowledge comes difficult decisions for countless people, who wrestle with fear about whether to get tested, and if so, what to do with the results. Am I My Genes? shows how real individuals have confronted these issues in their daily lives. Robert L. Klitzman interviewed 64 people who faced Huntington's Disease, breast and ovarian cancer, or Alpha-1 antitrypsin deficiency. The book describes--often in the person's own words--how each has wrestled with the vast implications that genetics has for their lives and their families. Klitzman shows how these men and women struggle to make sense of their predicament and its causes. They confront a series of quandaries--whether to be tested; whether to disclose their genetic risks to parents, siblings, spouses, offspring, friends, doctors, insurers, employers, and schools; how to view and understand themselves and their genetics; what treatments, if any, to pursue; whether to have children, adopt, screen embryos, or abort; and whether to participate in genetic communities. In the face of these uncertainties, they have tried to understand these tests and probabilities, avoid fatalism, anxiety, despair, and discrimination, and find hope, meaning, and a sense of wholeness. Forced to wander through a wilderness of shifting sands, they chart paths that many others may eventually follow. Klitzman captures here the voices of pioneers, some of the first to encounter the personal dilemmas introduced by modern genetics. Am I My Genes? is an invaluable account of their experience, one that will become all the more common in the coming years. "An extraordinary exploration...probing the many roles and implications of genetics in our lives today.... Filled with astonishing insights, this riveting book is vital reading for us all." --Paula Zahn "Klitzman lucidly discusses the moral and psychological complexities that come in the wake of genetic testing.... An important book for anyone who has the genes for pathology, which is all of us, and I recommend it highly." --Kay Redfield Jamison, author of An Unquiet Mind "An illuminating voyage through the medical, familial and existential quandaries faced by those of us at genetic risk." --Thomas H. Murray, President and CEO, The Hastings Center

How to Practice Academic Medicine and Publish from Developing Countries?

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Author : Samiran Nundy
Publisher : Springer Nature
ISBN 13 : 9811652481
Total Pages : 475 pages
Book Rating : 4.8/5 (116 download)

Book Synopsis How to Practice Academic Medicine and Publish from Developing Countries? by : Samiran Nundy

Download or read book How to Practice Academic Medicine and Publish from Developing Countries? written by Samiran Nundy and published by Springer Nature. This book was released on 2021-10-23 with total page 475 pages. Available in PDF, EPUB and Kindle. Book excerpt: This is an open access book. The book provides an overview of the state of research in developing countries – Africa, Latin America, and Asia (especially India) and why research and publications are important in these regions. It addresses budding but struggling academics in low and middle-income countries. It is written mainly by senior colleagues who have experienced and recognized the challenges with design, documentation, and publication of health research in the developing world. The book includes short chapters providing insight into planning research at the undergraduate or postgraduate level, issues related to research ethics, and conduct of clinical trials. It also serves as a guide towards establishing a research question and research methodology. It covers important concepts such as writing a paper, the submission process, dealing with rejection and revisions, and covers additional topics such as planning lectures and presentations. The book will be useful for graduates, postgraduates, teachers as well as physicians and practitioners all over the developing world who are interested in academic medicine and wish to do medical research.

Registries for Evaluating Patient Outcomes

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Author : Agency for Healthcare Research and Quality/AHRQ
Publisher : Government Printing Office
ISBN 13 : 1587634333
Total Pages : 385 pages
Book Rating : 4.5/5 (876 download)

Book Synopsis Registries for Evaluating Patient Outcomes by : Agency for Healthcare Research and Quality/AHRQ

Download or read book Registries for Evaluating Patient Outcomes written by Agency for Healthcare Research and Quality/AHRQ and published by Government Printing Office. This book was released on 2014-04-01 with total page 385 pages. Available in PDF, EPUB and Kindle. Book excerpt: This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care. Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure. The User’s Guide was created by researchers affiliated with AHRQ’s Effective Health Care Program, particularly those who participated in AHRQ’s DEcIDE (Developing Evidence to Inform Decisions About Effectiveness) program. Chapters were subject to multiple internal and external independent reviews.

Preventing Hazing

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Author : Susan Lipkins
Publisher : John Wiley & Sons
ISBN 13 : 9780787986988
Total Pages : 192 pages
Book Rating : 4.9/5 (869 download)

Book Synopsis Preventing Hazing by : Susan Lipkins

Download or read book Preventing Hazing written by Susan Lipkins and published by John Wiley & Sons. This book was released on 2006-08-28 with total page 192 pages. Available in PDF, EPUB and Kindle. Book excerpt: Written with clarity and passion, Preventing Hazing uncovers the deep roots of hazing, how and why it permeates schools, colleges, and communities, and what parents, teachers, and coaches can do to prevent it. The author shows how to recognize the warning signs, what to do if a student has been involved in a hazing (either as a victim, bystander, or perpetrator), how to deal with the moral, legal, and emotional aspects of hazing, and, ultimately, how to heal and move forward both as an individual and a community.

The Genetics of Cancer

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Author : B.A. Ponder
Publisher : Springer Science & Business Media
ISBN 13 : 9401106770
Total Pages : 222 pages
Book Rating : 4.4/5 (11 download)

Book Synopsis The Genetics of Cancer by : B.A. Ponder

Download or read book The Genetics of Cancer written by B.A. Ponder and published by Springer Science & Business Media. This book was released on 2012-12-06 with total page 222 pages. Available in PDF, EPUB and Kindle. Book excerpt: It has been recognized for almost 200 years that certain families seem to inherit cancer. It is only in the past decade, however, that molecular genetics and epidemiology have combined to define the role of inheritance in cancer more clearly, and to identify some of the genes involved. The causative genes can be tracked through cancer-prone families via genetic linkage and positional cloning. Several of the genes discovered have subsequently been proved to play critical roles in normal growth and development. There are also implications for the families themselves in terms of genetic testing with its attendant dilemmas, if it is not clear that useful action will result. The chapters in The Genetics of Cancer illustrate what has already been achieved and take a critical look at the future directions of this research and its potential clinical applications.

Genetics and Life Insurance

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Author : Mark A. Rothstein
Publisher : MIT Press
ISBN 13 : 9780262182362
Total Pages : 320 pages
Book Rating : 4.1/5 (823 download)

Book Synopsis Genetics and Life Insurance by : Mark A. Rothstein

Download or read book Genetics and Life Insurance written by Mark A. Rothstein and published by MIT Press. This book was released on 2004 with total page 320 pages. Available in PDF, EPUB and Kindle. Book excerpt: Experts discuss the economic, legal, and social issues surrounding the use of genetic testing in determining eligibility for life insurance. Insurance companies routinely use an individual's medical history and family medical history in determining eligibility for life insurance; this is part of the process of medical underwriting. Insurers have also long used genetic information, often derived from family history, in underwriting. But rapid advances in gene identification and genetic testing are changing the way we look at genetic information. Should the results of genetic testing (which might identify a predisposition toward disease not related to medical history) be available to life insurance medical underwriters? Few if any life insurers currently require genetic testing, but there are no laws or regulations prohibiting its use. Genetics and Life Insurance examines the complex economic, legal, and social issues surrounding the use of genetic information in life insurance underwriting. The contributors are legal scholars, representatives of the life insurance industry (including an actuary and an insurance physician), a geneticist, a genetic counselor, a philosopher, and a consumer advocate. They explore all aspects of an issue that has only recently drawn the attention of policymakers and the public. The book opens with a report on the results of a public opinion poll on genetics and life insurance. Succeeding chapters present the insurer perspective, a discussion of the economics of risk selection in life insurance, background information on the process of underwriting, a scientific analysis of genetic risks and mortality rates, a philosophical discussion of fairness and genetic underwriting, the viewpoints of consumers and genetics counselors, a comparison of different international policy approaches to the issue, and a legal analysis of antitrust implications when insurers collaborate in setting standards for medical underwriting. In the final chapter the editor addresses various policy options, examining the pros and cons of each one and assessing their political feasibility.

Protection of Human Genetic Information

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Author : Australia. Law Reform Commission
Publisher : Sydney : Australian Law Reform Commission
ISBN 13 : 9780642732118
Total Pages : 441 pages
Book Rating : 4.7/5 (321 download)

Book Synopsis Protection of Human Genetic Information by : Australia. Law Reform Commission

Download or read book Protection of Human Genetic Information written by Australia. Law Reform Commission and published by Sydney : Australian Law Reform Commission. This book was released on 2001 with total page 441 pages. Available in PDF, EPUB and Kindle. Book excerpt: 13. Law enforcement issues

Genetic Testing and the Governance of Risk in the Contemporary Economy

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Author : Lara Khoury
Publisher : Springer
ISBN 13 : 9783030437015
Total Pages : 354 pages
Book Rating : 4.4/5 (37 download)

Book Synopsis Genetic Testing and the Governance of Risk in the Contemporary Economy by : Lara Khoury

Download or read book Genetic Testing and the Governance of Risk in the Contemporary Economy written by Lara Khoury and published by Springer. This book was released on 2021-10-02 with total page 354 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book addresses emerging questions concerning who should bear responsibility for shouldering risk, as well as the viability of existing and experimental governance mechanisms in connection with new technologies. Scholars from 14 jurisdictions unite their efforts in this edited collection to provide a comparative analysis of how various legal systems are tackling the challenges produced by the legal aspects of genetic testing in insurance and employment. They cover the diverse set of norms that surround this issue, and share insights into relevant international, regional and national incursions into the field. By doing so, the authors offer a basis for comparative reflection, including on whether transnational standard setting might be useful or necessary for the legal aspects of genetic testing as they relate to the insurance and employment contexts. The respective texts cover a broad range of topics, including the prevalence of genetic testing in the contexts of insurance and employment, and policy factors that might affect this prevalence, such as the design of national health or social insurance systems, of private insurance schemes or the availability of low-cost direct-to-consumer genetic testing. Further, the field of genetics is gaining in importance at the international and regional levels. Relevant concepts – mainly genetic tests and genetic data/information – have been internationally defined, and these definitions have influenced definitions adopted nationally. International law also recognizes a “special status” for human genetic data. The authors therefore also consider these definitions and the recognition of the special status of human genetic data within regional and national legal orders. They investigate the range of norms that specifically address the use of genetic testing in employment and insurance, encompassing international sources – including human rights norms – that may be binding or non-binding, as well national statutory, regulatory and soft-law mechanisms. Accordingly, some of the texts examine general frameworks relevant to genetic testing in each country, including those that stem from general anti-discrimination rules and norms protecting rights to autonomy, self-determination, confidentiality and privacy. In closing, the authors provide an overview of the efficiency of their respective legal regimes’ approaches – specific and generalist – to genetic testing or disclosure of genetic information in the employment or insurance contexts, including the effect of lack of legal guidance. In this regard, some of the authors highlight the need for transnational action in the field and make recommendation for future legal developments.

Handbook of Global Bioethics

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Author : Henk A.M.J. ten Have
Publisher : Springer
ISBN 13 : 9789400725119
Total Pages : 0 pages
Book Rating : 4.7/5 (251 download)

Book Synopsis Handbook of Global Bioethics by : Henk A.M.J. ten Have

Download or read book Handbook of Global Bioethics written by Henk A.M.J. ten Have and published by Springer. This book was released on 2013-10-07 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: As the first of its kind, this handbook presents state-of-the-art information and analysis concerning the state of affairs in bioethics in around 40 countries. The country reports point out the most important discussions as well as the emerging topics in the field. Readers can orientate themselves quickly with regard to the various relevant issues, institutional structures and expertise available in these countries. The authorship of this reference work is truly global as it involves contributions from the best authors with innate knowledge of the bioethics situation in these countries.

Biology for AP ® Courses

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Author : Julianne Zedalis
Publisher :
ISBN 13 : 9781947172401
Total Pages : 1923 pages
Book Rating : 4.1/5 (724 download)

Book Synopsis Biology for AP ® Courses by : Julianne Zedalis

Download or read book Biology for AP ® Courses written by Julianne Zedalis and published by . This book was released on 2017-10-16 with total page 1923 pages. Available in PDF, EPUB and Kindle. Book excerpt: Biology for AP® courses covers the scope and sequence requirements of a typical two-semester Advanced Placement® biology course. The text provides comprehensive coverage of foundational research and core biology concepts through an evolutionary lens. Biology for AP® Courses was designed to meet and exceed the requirements of the College Board’s AP® Biology framework while allowing significant flexibility for instructors. Each section of the book includes an introduction based on the AP® curriculum and includes rich features that engage students in scientific practice and AP® test preparation; it also highlights careers and research opportunities in biological sciences.

Essential Genetic and Genomic Competencies for Nurses with Graduate Degrees

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Author : Karen E. Greco
Publisher :
ISBN 13 : 9781558104372
Total Pages : pages
Book Rating : 4.1/5 (43 download)

Book Synopsis Essential Genetic and Genomic Competencies for Nurses with Graduate Degrees by : Karen E. Greco

Download or read book Essential Genetic and Genomic Competencies for Nurses with Graduate Degrees written by Karen E. Greco and published by . This book was released on 2012 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt: "Describes and delineates the thirty eight essential genetic and genomic competencies that inform the practice of all nurses functioning at the graduate level in nursing, summarizes the key documents and processes used to identify these competencies, and identifies the members of the Steering, Advisory and Consensus Panel committees involved"--Provided by publisher.

Americans with Disabilities Act

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Author :
Publisher :
ISBN 13 :
Total Pages : pages
Book Rating : 4.:/5 (853 download)

Book Synopsis Americans with Disabilities Act by :

Download or read book Americans with Disabilities Act written by and published by . This book was released on 1992 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt:

The Genetic Information Nondiscrimination Act

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Author : United States. Congress. House. Committee on Energy and Commerce. Subcommittee on Health
Publisher :
ISBN 13 :
Total Pages : 208 pages
Book Rating : 4.0/5 ( download)

Book Synopsis The Genetic Information Nondiscrimination Act by : United States. Congress. House. Committee on Energy and Commerce. Subcommittee on Health

Download or read book The Genetic Information Nondiscrimination Act written by United States. Congress. House. Committee on Energy and Commerce. Subcommittee on Health and published by . This book was released on 2008 with total page 208 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Genetic Information Nondiscrimination Act of 2007

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Author : United States. Congress. Senate. Committee on Health, Education, Labor, and Pensions
Publisher :
ISBN 13 :
Total Pages : 60 pages
Book Rating : 4.:/5 (327 download)

Book Synopsis Genetic Information Nondiscrimination Act of 2007 by : United States. Congress. Senate. Committee on Health, Education, Labor, and Pensions

Download or read book Genetic Information Nondiscrimination Act of 2007 written by United States. Congress. Senate. Committee on Health, Education, Labor, and Pensions and published by . This book was released on 2007 with total page 60 pages. Available in PDF, EPUB and Kindle. Book excerpt: