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Author: Aviad E. Raz Publisher: Routledge ISBN: 1134005423 Category : Social Science Languages : en Pages : 437
Book Description
Carrier testing of adults provides information about the risk of passing a genetic mutation to your children, leading to reproductive (and some say, eugenic) decisions. Excessive carrier screening may have adverse effects, but it can also prevent suffering and open up new reproductive options. Raz's study focuses on the interplay of community genetics (the medical organisation of carrier screening) and genetic alliances (networks of individuals at risk), exploring how 'genetic communities' are emerging both within existing ethnic groups and around patients' organizations. While the interplay between carrier testing, reproduction and eugenics has sparked many discussions, this study provides a novel and much-needed perspective on its actual implementation and interpretation by community members. Conflating a cross-cultural spectrum of genetic communities, the benefits and perils of supporting (or restricting) carrier screening are located within broader social issues such as religion, ethnicity, multi-culturalism, abortion, stigmatization, suffering and care-giving. While carrier screening emerges as ultimately a morally justified pronatalist endeavour for the reduction of suffering, thus being different in principle from the 'old' eugenics, it can also carry unintended adverse consequences if left unattended to consumers, communities, or health professionals.
Author: Aviad E. Raz Publisher: Routledge ISBN: 1134005423 Category : Social Science Languages : en Pages : 437
Book Description
Carrier testing of adults provides information about the risk of passing a genetic mutation to your children, leading to reproductive (and some say, eugenic) decisions. Excessive carrier screening may have adverse effects, but it can also prevent suffering and open up new reproductive options. Raz's study focuses on the interplay of community genetics (the medical organisation of carrier screening) and genetic alliances (networks of individuals at risk), exploring how 'genetic communities' are emerging both within existing ethnic groups and around patients' organizations. While the interplay between carrier testing, reproduction and eugenics has sparked many discussions, this study provides a novel and much-needed perspective on its actual implementation and interpretation by community members. Conflating a cross-cultural spectrum of genetic communities, the benefits and perils of supporting (or restricting) carrier screening are located within broader social issues such as religion, ethnicity, multi-culturalism, abortion, stigmatization, suffering and care-giving. While carrier screening emerges as ultimately a morally justified pronatalist endeavour for the reduction of suffering, thus being different in principle from the 'old' eugenics, it can also carry unintended adverse consequences if left unattended to consumers, communities, or health professionals.
Author: Genetic Alliance Publisher: Lulu.com ISBN: 0982162219 Category : Biology Languages : en Pages : 104
Book Description
The purpose of this manual is to provide an educational genetics resource for individuals, families, and health professionals in the New York - Mid-Atlantic region and increase awareness of specialty care in genetics. The manual begins with a basic introduction to genetics concepts, followed by a description of the different types and applications of genetic tests. It also provides information about diagnosis of genetic disease, family history, newborn screening, and genetic counseling. Resources are included to assist in patient care, patient and professional education, and identification of specialty genetics services within the New York - Mid-Atlantic region. At the end of each section, a list of references is provided for additional information. Appendices can be copied for reference and offered to patients. These take-home resources are critical to helping both providers and patients understand some of the basic concepts and applications of genetics and genomics.
Author: Wendy R. Uhlmann Publisher: John Wiley & Sons ISBN: 1118210530 Category : Medical Languages : en Pages : 644
Book Description
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.
Author: Daniel Navon Publisher: University of Chicago Press ISBN: 022663809X Category : Medical Languages : en Pages : 409
Book Description
With every passing year, more and more people learn that they or their young or unborn child carries a genetic mutation. But what does this mean for the way we understand a person? Today, genetic mutations are being used to diagnose novel conditions like the XYY, Fragile X, NGLY1 mutation, and 22q11.2 Deletion syndromes, carving out rich new categories of human disease and difference. Daniel Navon calls this form of categorization “genomic designation,” and in Mobilizing Mutations he shows how mutations, and the social factors that surround them, are reshaping human classification. Drawing on a wealth of fieldwork and historical material, Navon presents a sociological account of the ways genetic mutations have been mobilized and transformed in the sixty years since it became possible to see abnormal human genomes, providing a new vista onto the myriad ways contemporary genetic testing can transform people’s lives. Taking us inside these shifting worlds of research and advocacy over the last half century, Navon reveals the ways in which knowledge about genetic mutations can redefine what it means to be ill, different, and ultimately, human.
Author: Institute of Medicine Publisher: National Academies Press ISBN: 0309047986 Category : Medical Languages : en Pages : 353
Book Description
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.
Author: Aviad E. Raz Publisher: Routledge ISBN: 1134005431 Category : Medical Languages : en Pages : 205
Book Description
The social and bioethical aspects of carrier testing and its assimilation by specific groups are examined through several qualitative case studies in traditional (religious, ethnic) as well as modern (secular-consumerist) communities in Israel and the U.S. Comparing the views of community members and health professionals, the analysis offers a new look on the relations between eugenics and "genetic responsibility."
Author: Vaughn Edelson Publisher: ISBN: 9780982162224 Category : Languages : en Pages : 60
Book Description
Evaluation of family health history represents a first step in identifying genetic contributors to health and can serve as an important basis for improving healthcare and encouraging a healthy lifestyle. Though family health history tools abound, neither the premise that they will make a difference in health outcomes nor the analysis of their usefulness along a medical-nonmedical continuum has been validated in a systematic, evidence-based study as measured by changed behavior leading to better personal health. The fundamental purpose of this project was to create and evaluate a customizable, nonmedical family health history toolkit (Does It Run In the Family?), informed by oral history and folklore traditions.
Author: Sheila Faith Weiss Publisher: University of Chicago Press ISBN: 0226891798 Category : History Languages : en Pages : 392
Book Description
The Faustian bargain—in which an individual or group collaborates with an evil entity in order to obtain knowledge, power, or material gain—is perhaps best exemplified by the alliance between world-renowned human geneticists and the Nazi state. Under the swastika, German scientists descended into the moral abyss, perpetrating heinous medical crimes at Auschwitz and at euthanasia hospitals. But why did biomedical researchers accept such a bargain? The Nazi Symbiosis offers a nuanced account of the myriad ways human heredity and Nazi politics reinforced each other before and during the Third Reich. Exploring the ethical and professional consequences for the scientists involved as well as the political ramifications for Nazi racial policies, Sheila Faith Weiss places genetics and eugenics in their larger international context. In questioning whether the motives that propelled German geneticists were different from the compromises that researchers from other countries and eras face, Weiss extends her argument into our modern moment, as we confront the promises and perils of genomic medicine today.
Author: Barbara B. Biesecker Publisher: Oxford University Press, USA ISBN: 0190626429 Category : Medical Languages : en Pages : 241
Book Description
A CRITICAL NEW APPROACH FOR LEARNING AND THRIVING IN A FIELD OF CHANGE The scope and responsibilities of today's genetic counselors exceed the reasonable capacity of any one educational resource. While the field's first-year curriculum may be relatively fixed, the landscape of what comes after that -- a dizzying mix of practice, ethics, research design, and professional competencies -- is increasingly broad. Advanced Genetic Counseling offers an overdue extension of the field's core curriculum. From navigating ethical dilemmas and potential conflicts of interest to confronting the biases and patterns of thought that can limit counselors' interactions with clients, it prepares readers to face the profession's most challenging aspects with confidence. Drawing on techniques from psychotherapy, social psychology, and health behavior, Advanced Genetic Counseling is an essential resource for trainees and mid-career professionals. It offers a roadmap not just for addressing client needs, but for the future of genetic counseling education.
Author: Genetic Alliance Publisher: ISBN: Category : Languages : en Pages : 100
Book Description
The purpose of the manual is to provide a genetics educational resource for patients and health professionals in the District of Columbia and increase awareness of specialty care in genetics. The manual opens with a basic introduction to genetic concepts followed by a description of the different types and applications of genetic tests. Information is also provided about diagnosis of a genetic disease, family-history taking, newborn screening, and genetic counseling. Helpful resources are included to assist in patient care, patient and professional education, and specialty genetics services in the District of Columbia and surrounding areas. At the end of each section, a list of selected references is provided if any additional information is desired. In addition, a series of consumer fact sheets are provided to be copied and offered to patients. These take-home resources will be critical in helping patients understand some of the basic concepts and applications of genetics.