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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 20 (22 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

Pickett OK, DeFrancis Sun B. 2012. Genetics: Professional resource brief (upd. ed.). Washington, DC: National Center for Education in Maternal and Child Health, multiple items.

Annotation: This brief is an electronic guide to recent resources on genetics and genomics; genetic testing, counseling, and disorders; and newborn screening. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Education in Maternal and Child Health, Georgetown University, Telephone: (202) 784-9770 E-mail: [email protected] Web Site: https://www.ncemch.org Available from the website.

Keywords: Genetic counseling, Genetic disorders, Genetic screening, Genetic services, Genetics, Genomics, Newborn screening, Resources for professionals, Testing

Genetic Alliance and District of Columbia Department of Public Health. 2010. Understanding genetics: A District of Columbia guide for patients and health professionals. Washington, DC: Genetic Alliance, 100 pp.

Annotation: This guide for patients and health professionals covers basic genetics concepts in addition to providing detailed information about genetic diagnosis, newborn screening, family health history, genetic counseling, and genetic testing and its application. It includes a discussion of the psychological and social implications as well as ethical and legal issues. Consumer fact sheets are also provided. The appendices include competencies in genetics for health professions. The guide is customized for the Washington, D.C. region and was produced as a partnership between the Genetic Alliance and the District of Columbia Department of Health.

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: Consumer education materials, District of Columbia, Genetic counseling, Genetic screening, Genetics, Genetics education, Resources for professionals

Genetic Alliance and New York - Mid-Atlantic Consortium for Genetic and Newborn Screening Services. 2008. Understanding genetics: A New York, Mid-Atlantic guide for patients and health professionals. Washington, DC: Genetic Alliance, 99 pp.

Annotation: This guide for patients and health professionals covers basic genetics concepts in addition to providing detailed information about genetic diagnosis, newborn screening, family health history, genetic counseling, and genetic testing and its application. It includes a discussion of the psychological and social implications as well as ethical and legal issues. Patient stories and consumer profiles are also provided. The appendices include competencies in genetics for health professions. The guide is customized for the New York, Mid-Atlantic region and is produced as a partnership between Genetic Alliance and the New York - Mid-Atlantic Consortium for Genetic and Newborn Screening Services.

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: Consumer education materials, Genetic counseling, Genetic screening, Genetics, Genetics education, Geographic regions, New York, Resources for professionals

New England Public Health Genetics Education Collaborative and Genetic Alliance. [2007]. Understanding genetics: A New England guide for patients and health professionals. Washington, DC; Genetic Alliance, 82 pp.

Annotation: The purpose of this manual is to provide a genetics educational resource for health professionals and consumers in the New England states and to increase awareness of specialty care in genetics. The manual opens with an introduction to genetics concepts, followed by a description of the different types and applications of genetics tests. Information on diagnosing a genetic disease; family-history taking; newborn screening; genetic counseling; indications for a genetic referral; psychological and social implications; and ethical, legal and social issues is also provided. Resources available in New England are listed, and a series of fact sheets for consumers that can be photocopied is included.

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: Diagnosis, Genetic counseling, Genetic disorders, Genetic screening, Genetics education

[Doksum T, Foster S]. 2006. The Genetics Education Needs Evaluation Project: Final report. [Cambridge, MA]: Abt Associates, 85 pp., plus appendices.

Annotation: This report describes a project whose central mission was to develop community-based participatory strategies to improve access to culturally and linguistically appropriate genetics information, resources, and services to assist underserved populations in making informed choices about their health. Collaborative partners included Abt Associates, the National March of Dimes Foundation, the Genetic Alliance, Family Voices, the Michigan GENE Project, and the Washington Heights/Inwood GENE Project (New York), and the Midwest Latino Research Center. Report contents include the executive summary; introduction; history of the project and the approach; a summary of information-gathering activities; an outline of community projects; a review of the development of national partnerships; reflections on the project infrastructure and partnerships; and lessons learned, next steps, and recommendations. Appendices include the project logic model and evaluation plan, local evaluation reports, literature and materials review, a summary of the literature on genetics education and underserved populations, a study of consumer organizations, a meeting summary, a research paper, notes from focus groups, community needs and assets assessments, and the partnership agreement. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org

Keywords: Collaboration, Community surveys, Culturally competent services, Final reports, Genetic counseling, Genetics, Genetics education, MCH research, Michigan, New York, Patient education, Program descriptions, Underserved communities

Coursey YL. 2006. Sickle Cell Foundation of Palm Beach County: Final report. West Palm Beach, FL: Sickle Cell Foundation of Palm Beach County, 8 pp., plus appendices.

Annotation: This report describes a project to strengthen and improve the follow-up, education, counseling, and coordination of care for families of infants who test positive for sickle cell disease or sickle cell trait. Report contents include descriptions of the population serviced in the five county region of Southeast Florida and barriers to service delivery, goals and objectives of the project, an outline of process measures, and a list of highlights of the project years 2003-2005. Appendices include books, booklets, and other handout informational materials for parents of children who tested positive for sickle cell disease/trait. Also included are a DVD and a VHS tape with a new born screening documentary video in English and Creole.

Contact: Sickle Cell Foundation of Palm Beach County, 1600 North Australian Avenue, West Palm Beach, FL 33407-5621, Telephone: (561) 833-3113 Fax: (561) 659-4505 Web Site: http://www.sicklecellpalmbeach.org

Keywords: Genetics education, Final reports, Florida, Genetic counseling, Genetic screening, Hemoglobinopathies, Local programs, Non English language materials, Sickle cell disease

National Coalition for Health Professional Education in Genetics. 2002. Genetics and major psychiatric disorders: A program for genetic counselors. Lutherville, MD: National Coalition for Health Professional Education in Genetics, 1 CD-ROM.

Annotation: This program provides an introduction to psychiatric genetics, with a focus on the genetics of common complex disease, for genetics professionals. It provides an introduction to complex disease and an overview of psychiatry, then discusses research in psychiatric genetics, unipolar (major) depression, bipolar disorder, schizophrenia, issues in psychiatric genetic counseling, and the future. The CD-ROM can be used on Windows and Macintosh computers.

Contact: National Coalition for Health Professional Education in Genetics, 2360 West Joppa Road, Suite 320, Lutherville, MD 21093, Telephone: (410) 583-0600 Fax: (410) 583-0520 E-mail: [email protected] Web Site: http://www.nchpeg.org Available from the website.

Keywords: Audiovisual materials, Bipolar disorder, CD-ROMs, Depression, Genetics, Genetics counseling, Psychiatry, Research, Schizophrenic disorders

Council of Regional Networks for Genetic Services. 1997. Guidelines for clinical genetic services for the public's health. Atlanta, GA: Council of Regional Networks for Genetic Services, 55 pp.

Annotation: This document provides detailed guidelines for state and local public health agencies to set up genetics services in order to prevent the occurrence of many birth defects, treat those that occur before damage results, and decrease the burden of chronic disabling diseases. The guidelines are written in seven parts: 1) organizational structure, 2) discussion of preventive potential, 3) types and scope of services, 4) research, 5) education, 6) documentation of needs and services, and 7) funding sources. Other issues discussed include qualifications of genetics staff, and privacy and confidentiality. [Funded by the Maternal and Child Health Bureau]

Keywords: Genetic counseling, Genetic screening, Genetic services, Genetics education, Neonatal screening, Prenatal screening, Public health services, State MCH programs

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

Czeizel A. 1988. The right to be born healthy: The ethical problems of human genetics in Hungary. New York, NY: Alan R. Liss, 194 pp.

Annotation: This book describes the author's experiences in operating a genetics counseling service in Hungary and presents case studies of individuals with a variety of genetic conditions, for whom pregnancy may be undertaken, may be approved with conditions, or should not be undertaken. It also discusses a baby's right to be born healthy, the dilemma of mother's versus infant's life, the ethical issues in keeping severely handicapped infants alive, the responsibility of men and women in taking genetics into account when choosing mates, artificial insemination, and ethical dilemmas of medical geneticists.

Keywords: Case studies, Ethics, Genetic counseling, Genetics, Hungary, International health

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

Evers-Kiebooms G, Cassiman JJ, Van den Berghe H, d'Ydewalle G. 1987. Genetic risk, risk perception, and decision making. New York, NY: Alan R. Liss, 333 pp. (Birth defects: Original article series; v. 23, no. 2)

Annotation: This book presents the proceedings of a conference held July 28-29, 1986 in Leuven, Belgium. It was designed to provide an exchange of information between genetics counselors and those in other situations dealing with risk perception and decision making under uncertainty. Presentations covered the state of the art in genetics, risk perception and decision making, and applying decision models and technologies to genetic risk.

Keywords: Decision making, Genetic counseling, Genetics, Prenatal diagnosis, Risk assessment

Weiss JO, Jones SL, eds. 1985. Education in genetics II: Nurses and social workers. Washington, DC: U.S. Department of Health and Human Services, Division of Maternal and Child Health, 136 pp.

Annotation: A second conference on genetic services for both nurses and social workers was held in June of 1984. The conference presentations focused on the need for the incorporation of genetics in to formal training programs for both professional groups. Recommendations made by both groups are included.

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org Available from the website.

Keywords: Genetic counseling, Genetics, Nursing, Social work

Forsman I, Bishop KK, eds. 1981. Education in genetics: Nurses and social workers. Rockville, MD: U.S. Department of Health and Human Services, Bureau of Community Health Services, Genetic Diseases Services Branch, 32 pp.

Annotation: This document contains the proceedings of a workshop given January 1980 for nurses and social workers regarding genetic services to individuals and families. Recommendations for both professions are included.

Keywords: Genetic counseling, Genetics, Nursing, Social work

Hall WT, Young CL. [1977]. Proceedings: Genetic disorders—Social service interventions. Pittsburgh, PA: University of Pittsburgh, Graduate School of Public Health, Public Health Social Work Program, 103 pp.

Annotation: This conference was held March 13-17, 1977, to discuss the current involvement of the social work field in genetics and to plan future interventions. A segment of the conference was devoted to providing information regarding the primary prevention of genetic disorders. Contents include: administrative issues; medical issues; social work issues (social work intervention, prenatal diagnosis, genetic counseling); social implications of genetic programs; and workshops (planning and providing genetic services, barriers to the use of genetic counseling, group counseling for families, and educational programs for social workers in genetics).

Keywords: Genetic counseling, Genetics, Social work

McGrath FC, Owen R. 1975. A survey of genetics and genetic counseling in social work education. Miami, FL: University of Miami Mailman Center for Child Development, Division of Social Work, 49 pp.

American Academy of Pediatrics, Committee on Children with Handicaps. 1971. The pediatrician and the child with mental retardation. Evanston, IL: American Academy of Pediatrics, 180 pp.

Annotation: The purpose of this book is to provide the pediatrician with up-to-date information and resources to assume a role in the treatment of children with mental retardation. The contents discuss mental retardation from the perspectives of diagnosis and evaluation, health services, genetic considerations, metabolic aspects, community services, residential care, legal considerations, psychological aspects, speech and language development, educational aspects, psychiatric considerations, nursing services, nutrition, physical therapy, and counseling.

Keywords: Children, Community programs, Counseling, Diagnosis, Evaluation, Genetics, Health services, Language development, Legal issues, Mental retardation, Metabolic diseases, Nursing services, Nutrition, Pediatricians, Physical therapy, Psychological characteristics, Residential care, Speech development

Bi-Regional Institute on Earlier Recognition of Handicapping Conditions (1970: University of California, Berkeley). 1970. Proceedings. Berkeley, CA: University of California, School of Public Health, 159 pp.

Annotation: These proceedings discuss acrocephalosyndactyly, craniofacial dysotosis, and related syndromes; genetic counseling clinics; minor anomalies as indicators of altered morphogenesis; biochemical aspects of handicapping conditions; biochemical screening; evaluation of screening procedures; what happens after screening; children and computers; prevention of mental retardation; fetal and neonatal assessment; newborn hearing screening; congenital dislocated hip in the Navajo Indian; mass computer evaluation of school children for heart disease; implications of screening techniques for comprehensive care; prevention of behavior disorders in early childhood; remediation of learning disabilities; poverty; and delivery of health services to children in the inner city.

Keywords: Acrocephalosyndactylia, American Indians, Assessment, Behavior disorders, Biochemical genetics, Children, Computers, Congenital hip dislocations, Craniofacial abnormalities, Developmental screening, Diagnosis, Disabilities, Evaluation, Genetic counseling, Genetic screening, Health services delivery, Hearing screening, Heart diseases, Inner city, Learning disabilities, Mental retardation, Newborn infants, Poverty, Prevention

Symposium on Human Genetics in Public Health (1964: University of Minnesota). 1964. Human genetics in public health: August 9, 10, 11, 1964, Minneapolis, Minnesota. Minneapolis, MN: University of Minnesota, Center for Continuation Study of the General Extension Division, 119 pp.

Annotation: This report of a conference presented by the Minnesota Department of Health, Children's Bureau, and University of Minnesota School of Public Health presents material and information on those activities and programs now concerned with human genetics as it applies to public health. The contents discuss the application of genetic knowledge to public health disciplines, genetics as a tool for the detection, prevention, and treatment of diseases, human genetics in public health research and programming, genetic counseling, genetic programs in schools of public health, and genetic programs in state agencies and institutions. [Funded by the Maternal and Child Health Bureau]

Keywords: Conferences, Genetic counseling, Genetics, Public health education

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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.