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Items in this list may be obtained from the sources cited. Contact information reflects the most current data about the source that has been provided to the MCH Digital Library.


Displaying records 1 through 10 (10 total).

Genetic Alliance. 2013-. Genes in life. Washington, DC: Genetic Alliance,

Annotation: This resource provides information about genetics and health. Topics include how genes work; genes, lifestyle, and environment; collecting family health history; genetic disease information; advocacy and support groups; financial planning; talking to families and health professionals; compensation for genetic testing; whole genome sequencing; screening vs. testing; disease research; patient privacy; clinical trials; and biobanks. Features include Ask the Experts, frequently asked questions, and a blog. [Funded in part by the Maternal and Child Health Bureau]

Contact: Genetic Alliance, 4301 Connecticut Avenue, N.W., Suite 404, Washington, DC 20008-2369, Telephone: (202) 966-5557 Secondary Telephone: (800) 336-GENE Fax: (202) 966-8553 E-mail: [email protected] Web Site: http://www.geneticalliance.org Available from the website.

Keywords: Communication, Counseling, Family health, Genetics, Information sources, Medical history, Research, Screening, Testing

Genetics in Primary Care Institute. 2012-. Time out for genetics webinar series. Chicago, IL: National Center for Medical Home Implementation, multiple items.

Annotation: This series comprises 10 webinars and companion fact sheets designed to increase awareness and improve understanding among health professionals related to the provision of genetic medicine in primary care settings. The series introduces the topic, explains the relevance of genetic medicine to primary care, and provides case examples of how it can be integrated into everyday practice. Topics include building an accurate family history, ordering tests, evaluation and referral, dispelling myths, counseling, technical assistance, resources, genetics across the lifespan, and epigenetics. [Funded by the Maternal and Child Health Bureau]

Contact: Genetics in Primary Care Institute , National Center for Medical Home Implementation, c/o American Academy of Pediatrics , 345 Park Boulevard, Itasca, IL 60143, Telephone: (847) 434-7605 Secondary Telephone: (800) 433-9016, ext. 7605 Web Site: http://geneticsinprimarycare.org/Pages/default.aspx Available from the website.

Keywords: Case studies, Medical genetics, Medical history, Primary care, Service integration

National Heart, Lung, and Blood Institute Health Information Center. 2010. A century of progress: Milestones in sickle cell disease research and care. Bethesda, MD: National Heart, Lung, and Blood Institute Health Information Center, 2 pp.

Annotation: This brochure provides an overview of sickle cell disease, explaining what it is and how research has led to advances in its treatment during the past century. The brochure also describes how the National Heart, Lung, and Blood Institute -- part of the National Institutes of Health -- has not only funded sickle cell research but has conducted large clinical trials and sponsored workshops and meetings to guide the research agenda. The back of the brochure is a time line displaying events related to sickle cell disease beginning in 1910 when it was first described by Chicago Physician James B. Herrick.

Contact: National Heart, Lung, and Blood Institute Health Information Center, P.O. Box 30105, Bethesda, MD 20824-0105, Telephone: (301) 592-8573 Secondary Telephone: (240) 629-3255 Fax: (301) 592-8563 E-mail: [email protected] Web Site: http://www.nhlbi.nih.gov/health/infoctr/index.htm Available from the website.

Keywords: Blood and lymphatic disease, Genetics, History, Medical research, Sickle cell disease

Eanet K, Rauch JB. 2000. Genetics and genetic services: A child welfare workers' guide. Washington, DC: Child Welfare League of America, 209 pp.

Hinton CF, Greendale K, Laxova R, Elsas LJ II, eds. 2000. Cancer, genetics, and public health: Proceedings transcribed from a conference held on May 16, 1998, Atlanta, Georgia. Atlanta, GA: Council of Regional Networks for Genetic Services, 128 pp.

Annotation: This conference proceedings is the product of an interdisciplinary meeting among public health professionals, academic leaders, and consumers, all dedicated to promoting the beneficial use of the discipline of medical genetics in predicting and preventing premature morbidity and death caused by genetic sensitivity. The proceedings was transcribed and edited from platform presentations delivered in Atlanta, Georgia in parallel with the first National Conference on Genetics and Disease Prevention. It is divided into four sections, which deal with: (1) transferring genetics research into public health action to prevent cancer, (2) educational resources for public health programs, (3) barriers to accessing cancer genetics services and services for underserved minorities, and (4) the closing statement on challenges for public health in cancer genetics. [Funded in part by the Maternal and Child Health Bureau]

Keywords: Access to health care, Barriers, Cancer, Conference proceedings, Genetics, Medical research, Minority health, Predisposition, Public health, Public health programs, Underserved communities

Lewin ME, Lipoff E, eds. 1997. Information trading: How information influences the health policy process. Washington, DC: National Academy Press, 142 pp.

Annotation: The case studies selected and presented in this volume address the adoption of the Japanese just-in-time manufacturing strategy to information development and trading on Capitol Hill; funding of graduate medical education as proposed by President Clinton; the development of New York State legislation phasing out the state's hospital rate-setting system with a more market-oriented approach for funding graduate medical education and other public goods such as care for the uninsured; the Congressional debate over reauthorization of the National Institutes of Health, legislative efforts in the 104th U.S. Congress to regulate the use of genetic information; and overtures in the Congress to reform Medicare payments to participating health maintenance organization risk contractors. Each case study was written by a Robert Wood Johnson Health Policy Fellow.

Contact: National Academies Press, 500 Fifth Street, N.W., Keck 360, Washington, DC 20001, Telephone: (202) 334-3313 Secondary Telephone: (888) 624-8373 Fax: (202) 334-2451 E-mail: [email protected] Web Site: http://www.nap.edu $28.50 plus $4.00 shipping and handling. Document Number: ISBN 0-309-05793-0.

Keywords: Case studies, Federal government, Genetics, Government information, Health policy, Information dissemination, Information sources, Medical education, Medicare, National Institutes of Health, New York, Policy development, United States

Rauch JB, Curtiss CR. 1992. Taking a family health/ genetic history: An ethnocultural learning guide and handbook. Baltimore, MD: University of Maryland at Baltimore, School of Social Work, 104 pp.

Annotation: This guide is for child welfare workers and other human service providers involved with foster children and children who are being adopted. The objective is to equip child welfare workers to obtain genetic family histories from clients with diverse cultural backgrounds. Genetic counselors and other human service professionals will also be able to use portions of the guide. The guide explains a procedure for obtaining family genetic histories, reviews basic genetics, describes genetic services, discusses attributes of cultural competence, presents a content and process framework for task-focused ethnocultural learning. Finally, it offers suggestions for working with interpreters, and gives pointers on interviewing involuntary clients. A list of ethnocultural and genetic resource organizations and a bibliography are provided. [Funded by the Maternal and Child Health Bureau]

Keywords: Child health, Cultural diversity, Culturally competent services, Family health, Genealogy, Genetic counseling, Genetic counselors, Genetics, Medical history

U.S. Department of Health and Human Services, Public Health Service, National Institutes of Health, National Institute of Child Health and Human Development. 1991. Genetics and teratology: An evaluation and assessment of the state of the science. Bethesda, MD: National Institute of Child Health and Human Development, 182 pp.

Annotation: This report provides a multidisciplinary look at the state of the science of genetics and teratology and identifies promising research questions for the future. It is divided into four basic sections of embryogenesis, later development, teratology and clinical genetics, and developmental immunology. The report is heavily clinical and technically detailed in nature, although a more general executive summary is also provided.

Contact: Eunice Kennedy Shriver National Institute of Child Health and Human Development, P.O. Box 3006, Rockville, MD 20847, Telephone: (800) 370-2943 Secondary Telephone: (888) 320-6942 Contact Phone: (301) 496-5097 Fax: (866) 760-5947 Web Site: https://www.nichd.nih.gov/Pages/index.aspx Available in libraries.

Keywords: Assessment, Evaluation, Genetic disorders, Genetics, Medical research, Teratology

Andrews LB. 1987. Medical genetics: A legal frontier. Chicago, IL: American Bar Foundation; Springfield, VA: distributed by National Technical Information Service, 284 pp.

Annotation: This book is intended to provide an analysis of laws related to medical genetics for people who work in the medical genetics field and related health care fields, including researchers, clinicians, paraprofessionals, and public health officials. It presents an overview of the laws affecting the following areas: medical genetics and legal responsibility, the social and policy framework, regulations of genetic research in humans, concerns in embryo and fetal research, provision of genetic services, genetic counseling, organ transplantation, confidentiality of genetic information, and mandatory screening, diagnosis, and treatment. Appendices contain the Nuremberg code of ethics in medical research and the National Institutes of Health's points to consider in the design and submission of human somatic-cell gene therapy protocols. [Funded by the Maternal and Child Health Bureau]

Keywords: Administrative personnel, Confidentiality, Genetic counseling, Genetics, Legal issues, Legal responsibility, Medical research, Paraprofessional personnel, Public health programs, Reports, Research personnel, Social policy

Warkany J. 1971. Congenital malformations: Notes and comments. Chicago, IL: Year Book Medical Publishers, 1309 pp.

Annotation: This work discusses general considerations of teratology, etiologic factors, and general disturbances of growth and development. Succeeding chapters discuss malformations in these systems: central nervous system, eye, ear, endocrine glands, cardiovascular, respiratory tract, face, oro-gastrointestinal tract, skeletal, muscular, urogenital, and skin. It also discusses tumors and malformations, hamartoses and adenomatoses.

Keywords: Congenital abnormalities, Genetics, Medical reference books, Textbooks

   

The MCH Digital Library is one of six special collections at Geogetown University, the nation's oldest Jesuit institution of higher education. It is supported in part by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under award number U02MC31613, MCH Advanced Education Policy with an award of $700,000/year. The library is also supported through foundation and univerity funding. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.