61. MoSt GeNe/Genetic Drift/Consumer Issues/Barriers To Effective Genetics Services For many individuals with birth defects or genetic disorders, imparted to the general population regarding birth defects, genetic disorders can chronic http://www.mostgene.org/gd/gdvol08c.htm

Previous Section This Issue- Table of Contents Consumer Issues in Genetics Services Vol. 8: Winter, 1992 Barriers to Effective Genetics Services Providing Genetic Information to Native Americans Geographic Considerations in Genetics Services The Financial Management of Genetic Services Providing Genetic Information to Native Americans by Susan O. Lewin, M.D. (Medical geneticist) and Elizabeth Whiteman Run Him (Health Department Education Coordinator) The provision of services to Native American families with a genetic disorder requires special considerations. Medical professionals talk of nondirective counseling, and make efforts to offer a patient or family genetic information so that they can make an informed decision that is appropriate for themselves. We do this carefully, but often, when we talk with a person of a different ethnic group or cultural background, we continue to operate out of our own cultural and ethnic assumptions, so that we judge outcomes and interactions from those assumptions. If the outcome is consistently different from what we would expect, we judge that we have failed, rather than being aware that our approach may not have made sense, may have been offensive or against accepted norms for the person receiving the information. The most likely way to succeed, assuming goodwill on both parts, is to suspend one's own ethnicity and culture in judging the outcome and to be open and willing to learn about the patients background. In this way one is more likely to be able to provide the information that is considered important and have it be heard. The patient will receive that information in a way that may be useful in making a decision that is wise for their health, and does not place them at odds with themselves, their family or their community. The following are some simple general statements that may be helpful:

62. Cochrane Cystic Fibrosis & Genetic Disorders News general information on genetic disorders. Cystic Fibrosis. Sickle Cell Disease Thalassaemia. Haemophilia. Other genetic disorders http://www.liv.ac.uk/cfgd/News/Links.htm

Cystic Fibrosis . Phenylketonuria . Sickle Cell . Haemophilia . Other Genetic Disorders Links The Group has selected and organised links to resources available via the Internet. The links detailed at this location may be of interest to members of the public, consumers, new reviewers as well as long-standing collaborators. The groupings of our selected links are summarised immediately below. Click on the link grouping to go to a table of related links. Some URLs may be used more than once on this page. If you have any suggestions for links that should be added here, please email your recommendations. General information on genetic disorders Cystic Fibrosis Haemophilia Other genetic disorders ... Miscellaneous General information on genetic disorders Genetic Interest Group Jeans for Genes The Globin Gene Server The Association of Genetic Support of Australasia ... Go to top of page Cystic Fibrosis CF Trust CF Foundation Solvay Healthcare The British Thoracic Society ... Pennsylvania Cystic Fibrosis Inc.

63. Facts On File, Inc. The Encyclopedia of genetic disorders and Birth Defects, Second Edition The text includes a general essay on the basics of genetic science and its http://www.factsonfile.com/newfacts/FactsDetail.asp?SIDText=0816038090&PageValue

64. Genetic Counseling to the general public, and many doctors considered training in genetics a luxury. Thus, the comprehension and control of genetic disorders is, http://www.gfmer.ch/Books/Reproductive_health/Genetic_counseling.html

Reproductive health GENETIC COUNSELING C.D. DeLozier-Blanchet Division of Medical Genetics, Department of Genetics and Microbiology, University Medical Centre, 1211 Geneva 4, Switzerland Introduction Not so long ago medical genetics was perceived as a highly specialized branch of medicine, of relatively little importance to the general public, and many doctors considered training in genetics a luxury. Such attitudes have largely changed today, with the recognition that many common disorders have at least partial genetic origin, and with the rapid development of powerful diagnostic tests for both chromosomal and single gene disorders. Some knowledge of genetics is considered as essential today for any health professional. Some 2-3% of infants are born with congenital malformations, the majority of which have at least a partially genetic basis. And if one considers the causes of illness in persons up to the age of 25 years or so, at least 5% of all individuals will suffer by adulthood from a malformation or disease with a major genetic component. (Baird et al., 1988). Thus, the comprehension and control of genetic disorders is, particularly with regard to the decline in mortality and morbidity from infectious disease, a major public health concern. What is genetic counseling?

65. REVIEWS genetic disorders Sourcebook Basic Consumer Information about Hereditary Diseases It provides useful information about alternative medicine in general, http://libres.curtin.edu.au/libres11n1/reviews.htm

REVIEWS: Library and Information Science Research Electronic Journal ISSN 1058-6768 2001 Volume 11 Issue 1; March. Bi-annual LIBRES11N2 REVIEWS REVIEWS Reviews in this issue: Cook , Allan R., ed., Alternative Medicine Sourcebook . 1st. ed. Health Reference Series. Detroit, MI: Omnigraphics, 1999. 737 pp. ISBN: 0-7808-0200-4 Reviewed by Necia Parker-Gibson Massimini , Kathy, ed. Genetic Disorders Sourcebook: Basic Consumer Information about Hereditary Diseases and Disorders, Including Hemophilia, Huntington's Disease, Sickle Cell Anemia, and More; Facts about Genes, Gene Research and Therapy, Genetic Screening, Ethics of Gene Testing, Genetic Counseling, and Advice on Coping and Caring; Along with a Glossary of Genetic Terminology and a Resource List for Help, Support, and Further Information . 2nd ed. Detroit: Omnigraphics, 2000. Series: Health Reference Series. 768 p. + xiv. ISBN: 0-7808-0241-1. $78.00. Reviewed by Dean Hendrix Muth , Annemarie S., ed. Asthma Sourcebook . Series: Health Reference Series. Detroit, MI: Omnigraphics, 2000. 627 pp. ISBN: 0-7808-0381-7. Reviewed by Dawn Olmsted Swanson Swanson,

66. The DRM WebWatcher: Rare Disorders Can t find the rare or genetic disorder you are looking for in our section on specific The site also offers general information about rare disorders, http://www.disabilityresources.org/RARE.html

Home Subjects States Librarians ... Contact Us The DRM WebWatcher (Subjects) Rare Disorders Updated 9/2004 A B C D ... About/Hint/Link Can't find the rare or genetic disorder you are looking for in our section on specific diseases ? These sites provide information or linkages relating to a wide variety of rare and genetic disorders. Note: Parents of children with rare disorders who are looking for other parents of children with the same conditions may also want to check our page of matching services The Genetic Alliance Formerly the Alliance of Genetic Support Groups, the Alliance "an international coalition of individuals, professionals and genetic support organizations that is working together to enhance the lives of everyone impacted by genetic conditions." Its web site includes a database of organizations that can be searched by genetic condition, organization name, and even services offered. Birth Defect Research for Children Formerly the Association of Birth Defect Children (ABDC) - my, we have a lot of name changes this year! - the Asociation provides parents and professionals with information about birth defects and services for children with disabilities, sponsors the National Birth Defect Registry and parent matching service, and studies links between drugs, radiation, alcohol, chemicals, lead, mercury, dioxin and birth defects. The site features fact sheets, a newsletter, links, and information about the organization.

67. RCA: General Synod 2001: Report Of The Commission On Christian Action The 1999 general Synod voted to circulate the 1999 report, genetic But, for which genetic disorders should newborn tests be performed and who should http://www.rca.org/synod/minutes/2001/action/report.html

@import "/data/css/rca.css"; Print this page Email this page Inside Leaders Our Call Board of Benefits Services Called to Serve Commissioned Pastors ... News You are here: home synod minutes action General Synod 2001: Report of the Commission on Christian Action Report of the Commission on Christian Action The Commission on Christian Action met November 16-17, 2000, on the campuses of Hope College and Western Theological Seminary in Holland, Michigan; and February 9-10, 2001, at the Xavier Retreat and Conference Center in Convent Station, New Jersey. GENETIC TESTING AND SCREENING The Commission on Christian Action presented reports on genetic engineering to the General Synod in 1988 and in 1999. The 1999 General Synod voted to circulate the 1999 report, "Genetic Engineering: An Update" ( MGS 1999 , pp. 87-98) and directed the Office of Social Witness and the RCA Distribution Center to make study resources available to RCA members and congregations ( MGS 1999 , R-28, p. 98). In November 2000 the commission and the Office of Social Witness presented a forum, "New Genetics: Issues in Science, Faith, and Ethics," on the campuses of Hope College and Western Theological Seminary. The1999 General Synod also directed the Commission on Christian Action to follow the 1999 paper with an analysis of the moral and ethical questions that genetic engineering raises, for report to the General Synod 2001 ( MGS 1999 , R-22, p. 98).

68. Mental Health: A Report Of The Surgeon General - Chapter 3 general Categories of Mental disorders of Children The disorder sometimes runs in families, but the precise role of genetic and environmental factors http://www.surgeongeneral.gov/library/mentalhealth/chapter3/sec6.html

Chapter 3 Children and Mental Health Normal Development Theories of Development Social and Language Development ... References Other Mental Disorders in Children and Adolescents Anxiety Disorders The combined prevalence of the group of disorders known as anxiety disorders is higher than that of virtually all other mental disorders of childhood and adolescence (Costello et al., 1996). The 1-year prevalence in children ages 9 to 17 is 13 percent (Table 3-1). This section furnishes brief overviews of several anxiety disorders: separation anxiety disorder, generalized anxiety disorder, social phobia, and obsessive-compulsive disorder. Treatments for all but the latter are grouped together below. Separation Anxiety Disorder Separation anxiety is often associated with symptoms of depression, such as sadness, withdrawal, apathy, or difficulty in concentrating, and such children often fear that they or a family member might die. Young children experience nightmares or fears at bedtime. About 4 percent of children and young adolescents suffer from separation anxiety disorder (DSM-IV). Among those who seek treatment, separation anxiety disorder is equally distributed between boys and girls. In survey samples, the disorder is more common in girls (DSM-IV). The disorder may be overdiagnosed in children and teenagers who live in dangerous neighborhoods and have reasonable fears of leaving home. The remission rate with separation anxiety disorder is high. However, there are periods where the illness is more severe and other times when it remits. Sometimes the condition lasts many years or is a precursor to panic disorder with agoraphobia. Older individuals with separation anxiety disorder may have difficulty moving or getting married and may, in turn, worry about separation from their own children and partner.

69. Mental Health: A Report Of The Surgeon General - Chapter 4 Thus, the genetic complexities of the common depressive disorders ultimately may rival The major risks of ECT are those of brief general anesthesia, http://www.surgeongeneral.gov/library/mentalhealth/chapter4/sec3_1.html

Chapter 4 Adults and Mental Health Chapter Overview Mental Health in Adulthood Stressful Life Events ... References Etiology of Mood Disorders Biologic Factors in Depression the biological abnormalities interrelate, how they correlate with behavioral and emotional patterns that seem to distinguish one subcategory of major depression from another, and how they respond to diverse forms of therapy. In the search for biological changes with depression, it must be understood that a biological abnormality reliably associated with depression may not actually be a causal factor. For example, a biologic alteration could be a consequence of sleep deprivation or weight loss. Any biological abnormality found in conjunction with any mental disorder may be a cause, a correlate, or a consequence, as discussed in Chapter 2. What drives research is the determination to find which of the biological abnormalities in depression are true causes, especially ones that might be detectable and treatable before the onset of clinical symptoms. Monoamine Hypothesis For many years the prevailing hypothesis was that depression was caused by an absolute or relative deficiency of monoamine Despite the problems with the hypothesis that monoamine depletion is the primary cause of depression, monoamine impairment is certainly one of the manifestations, or correlates, of depression. Therefore, the monoamine hypothesis remains important for treatment purposes. Many currently available pharmacotherapies that relieve depression or cause mania, or both, enhance monoamine activity. One of the foremost classes of drugs for depression, SSRIs, for example, boost the level of serotonin in the brain.

70. Rare Diseases In the meantime, try focusing on the general characteristics of your disease. The encyclopedia of genetic disorders and birth defects. http://www.lib.uchicago.edu/e/su/med/rare.html

Search the Library catalog Cross-Search the Library website for in Keyword anywhere Title keyword Author keyword Subject keyword ISBN for in General Science Law for Catalogs Database Finder Hours My Accounts ... Medicine Rare Diseases FIND: Articles Books Statistics Meetings ... Home Rare Diseases Introduction Books Journals Internet ... Other data sources Introduction The purpose of this guide is to assist faculty, students, and staff of the University of Chicago find information about rare diseases and disorders. This guide is not meant to be exhaustive but to highlight key resources to help you start your research.. Comments and suggestions regarding this guide are welcome. Sources of Information Book Resources Finding a recent guide specifically on the disease in question may be difficult as there are very few books entirely devoted to a specific rare disease, or that are tagged with a subject or title of "Rare Diseases 101". Genetic related conditions and diseases are spread over many potential call number ranges in genetics, pediatrics, human embryology, anatomical pathology, etc. Due to the explosion in the information within medical genetics, there will probably be some adjustments within the classifications schemes of the Library of Congress in the future. In the meantime, try focusing on the general characteristics of your disease. For example, does your disease impact a specific system of the body? Then check the RC classification for textbooks in internal medicine related to the region of the body your disease impacts. For example

71. Project MUSE Every genetic disorder that is present at a high rate in any subgroup of of diseases in general and the distinction between inherited disorders such as http://muse.jhu.edu/journals/shofar/v021/21.4simon.html

How Do I Get This Article? Athens Login Access Restricted This article is available through Project MUSE, an electronic journals collection made available to subscribing libraries NOTE: Please do NOT contact Project MUSE for a login and password. See How Do I Get This Article? for more information. Login: Password: Your browser must have cookies turned on Simon, Edward "Jewish Genetic Disorders: A Layman's Guide (review)" Shofar: An Interdisciplinary Journal of Jewish Studies - Volume 21, Number 4, Summer 2003, pp. 170-172 Purdue University Press Excerpt This book provides precisely what it promises. Every genetic disorder that is present at a high rate in any subgroup of Jews (for example, those from Libya) is described in a clear and concise manner. A glossary provides help with unfamiliar terms. And there is a detailed index. Furthermore, the disorders are grouped together by symptoms so a disease might be located even if its name is not familiar. The book opens with a discussion of diseases in general and the distinction between inherited disorders such as Tay Sachs and acquired ones like AIDS. Each "ethnic group" seems to have certain diseases in excess. While to some, this observation may smack of racism, in fact ignorance is dangerous. Knowing that your group is subject to a particular ailment, genetic or otherwise, makes it more likely that the problem can be detected at an early stage. For example, Ashkenazic Jews should be particularly diligent in being screened for colon cancer.

72. THE MERCK MANUAL, Sec. 21, Ch. 286, General Principles Of Medical general. Human development depends on genetic and environmental factors. Identifying a definite carrier of the genetic disorder may allow the patient http://www.merck.com/mrkshared/mmanual/section21/chapter286/286a.jsp

73. Canine Hip And Elbow Dysplasia Resources general Overview of CHD. Acme Pet presents Canine Genetics Primer Orthopedic disorders of Dogs includes discussions of many common disorders on the http://www.workingdogs.com/doc0090.htm

The international magazine for and about working and sporting dogs and the people who love them. Welcome Greeting Cards Weather Center OUTFITTER ... Site Map RECOMMENDED READING: Control of Canine Genetic Diseases by George Padgett How to understand the mechanics of inheritance, how to deal with percentages and predictability of outcome, and how to breed away from such scourges as canine hip dysplasia. Canine Hip and Elbow Dysplasia Resources By Moc Klinkam; Rev. June 3, 2002 - Fred Forrest These on-line resources provide valuable educational information about canine hip dysplasia and other common canine orthopedic diseases and conditions and their inheritance, diagnosis, and treatment. Most of these resources provide comprehensive, non-breed specific coverage of the topics. OFA General Overview of CHD Veterinary Research Radiography/Diagrams ... Mobility Aids Orthopedic Foundation for Animals (OFA) Orthopedic Foundation for Animals is the recognized certifying body in the United States for hip and elbow dysplasia, and other genetic canine diseases. They feature a database where you can easily look up the hip and elbow evaluations for thousands of dogs. How Hips Are Graded is explained on the OFA web site with accompanying graphics and evaluative detail.

74. MedlinePlus: Genetic Disorders Teenagers; Basics on Genes and genetic disorders (Nemours Foundation). Women; genetic disorders in Pregnancy (American College of Obstetricians and http://www.nlm.nih.gov/medlineplus/geneticdisorders.html

@import url(http://www.nlm.nih.gov/medlineplus/images/advanced.css); Skip navigation Other health topics: A B C D ... List of All Topics Genetic Disorders Contents of this page: News From the NIH Overviews Diagnosis/Symptoms ... Women Search MEDLINE/PubMed for recent research articles on Genetic Disorders You may also be interested in these MedlinePlus related pages: Birth Defects Celiac Disease Cleft Lip and Palate Cystic Fibrosis ... Genetics/Birth Defects Latest News Scientists Make First Comparison of Chimp, Human Genes (08/31/2005, Scripps Howard News Service) Anti-Cancer Drugs May Hold Promise for Premature Aging Disorder (08/29/2005, National Human Genome Research Institute) From the National Institutes of Health Genes and Disease (National Center for Biotechnology Information) Genes and Populations (National Institute of General Medical Sciences) Also available in: Spanish Genetics FAQ (National Human Genome Research Institute) Genetics Home Reference (National Library of Medicine) Overviews JAMA Patient Page: Genetics (American Medical Association) - Links to PDF Slide Show: How Genetic Disorders Are Passed From Parents to Children (Mayo Foundation for Medical Education and Research) Your Genes, Your Health

75. Genetic Disorders: The Links To Diet Explores the role of diet in birth defects and genetic disorders. Includes nutritional links to disorders such as Down syndrome, cerebral palsy, http://www.ctds.info/genetic_disorders.html

Con nective Tissue Disorder Home Search Site Map ... Links Genetic Disorders The Links to Diet Read my Contents: Overview Genetic Disorders and Birth Defects Treatable Through Diet Prenatal Nutrition and Birth Defects Genetic Disorders, Birth Defects and Logic ... General Information on Genes, Nutrition and Disease Overview Many researchers and support groups state that birth defects and genetic disorders, especially connective tissue disorders such as Marfan syndrome osteogenesis imperfecta and Ehlers-Danlos syndrome , can't possibly be cured through diet because they are inherited genetic disorders. This conclusion is invalid simply because many birth defects and inherited genetic disorders have been found to be improved, or even cured, through diet. The old school of thinking that a birth defect or inherited disorder had to be caused by a single gene is no longer widely held in medical circles. The breakthrough concept in research is that many birth defects and inherited disorders are influenced by both genes and environmental factors, especially nutrition. Genes may make people susceptible to certain defects and disorders, but they are often only a part of the picture. "Genes are not necessarily destiny. They are influenced by the chemistry of what we consume." - article on

76. HealthyNJ--Information For Healthy Living--Genetic Disorders genetic disorders genetic Testing and Counseling Gene Therapy. genetic disorders. genetic disorders from NOAH NOAH, New York Online Access to Health, http://www.healthynj.org/dis-con/gene/links.htm

Additional Information General Description New Jersey Resources Recommended Web Sites Patient Education ... PubMED Search Recommended Web Sites Genetic Disorders Genetic Testing and Counseling Gene Therapy Genetic Disorders Genetic Disorders from NOAH - NOAH, New York Online Access to Health, is maintained by a group of organizations that include the New York Academy of Medicine, the New York City Department of Health, and the New York Hospital-Cornell Medical Center. The information obtained at this web site can be accessed in English or Spanish and includes links to information on genetic testing and couseling, gene therapy, and specific diseases. Basics on Genes and Genetic Disorders - Intended for teens, this site from KidsHealth provides a general explanation, links to related articles on the site, and links to additional information. - Click on a body system or a chromosome number to learn about a variety of genetic diseases; from the National Center for Biotechnology Information.

77. Medical Genetics Introduction to genetics, Genomes and Genes; Inheritance and genetic Variation Overview and Epidemiology; Cytogenetics and Chromosomal disorders http://arbl.cvmbs.colostate.edu/hbooks/genetics/medgen/

Introduction and Guide Contributors Hypertextbook Menu Fundamental Concepts of Genetics Introduction to Genetics, Genomes and Genes Inheritance and Genetic Variation Gene Mutations Population Genetics Quantitative Genetics Genetic Disease Overview and Epidemiology Cytogenetics and Chromosomal Disorders Monogenic Diseases Polygenic and Multifactorial Diseases Selected Genetic Diseases Medical Genetic Technology Genetic Therapy DNA Testing Last updated on January 10, 1999 Send comments via form or email to rbowen@lamar.colostate.edu

78. Genetic Diseases In Ashkenazi Jews Some genetic Diseases Are More Common in Ashkenazi Jews In comparison, the percentage of people in the general US population that have any mutation in http://www.dnadirect.com/resource/genetics_101/GH_Ashkenazi.jsp

79. ANNALS ONLINE -- Collected Resources : Genetic Diseases -- General genetic Diseases general. Citations 110 of 25 total displayed. genetic Causes of Mental Retardation HUGO W. MOSER Ann. NY Acad. Sci. http://www.annalsnyas.org/cgi/collection/geneticdisgen?page=1

80. ANNALS ONLINE -- Collected Resources : Genetic Diseases -- General genetic Diseases general. Citations 2125 of 25 total displayed. genetic Factors in the Genesis of Alzheimer s Disease PH ST GEORGE-HYSLOP http://www.annalsnyas.org/cgi/collection/geneticdisgen?page=3

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