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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 15 (15 total).

American College of Medical Genetics. n.d.. Hearing loss, genetics, and your child. Bethesda, MD: American College of Medical Genetics, 2 pp.

Annotation: This brochure provides information for parents of children with hearing loss. The brochure discusses genetics and hearing loss; insurance and paying for genetic testing; what parents should do once hearing loss has been diagnosed; why it is important for children with hearing loss to be seen by a geneticist; how to prepare for the genetics appointment; and what happens at the appointment.

Keywords: Children, Consumer education materials, Genes, Genetic disorders, Genetic screening, Genetic services, Genetics, Hearing disorders, Hearing screening, Hearing tests, Infants

Martzke M, Anckner S, Lindow-Davies C, Kennedy S, Quinn M. 2022. August 18 Round Table: Working with Families Virtually. [Washington, DC]: Association of Maternal and Child Health Programs; [Washington, DC]: National Genetics Education and Family Support Center at Expecting Health, 20 m 17 s.

Annotation: This recorded webinar from August 18, 2022, features Molly Martzke, Senior Program Manager at the National Genetics Education and Family Support Center at Expecting Health, sharing insights on their shift to virtual family engagement programming during the pandemic and the sustainable practices that emerged. Martzke provides an overview of HRSA's Division of Services for Children with Special Health Needs (DSCHSN) genetics programs, including their educational initiatives, the coordination between seven regional genetics networks, and the function of the national coordinating center. The presentation highlights Expecting Health's collaborative approach with partner organizations like Parent to Parent, while introducing participants to valuable Family Center Resources including their website, podcast series, and ongoing webinars designed to support families navigating genetic conditions and services across different regions of the country.

Keywords: Disaster planning, Family support services, Genetic screening, Regional genetics networks, Deafness, Hearing disorders

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.

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.

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

Reyes C, Van de Putte L, Falcón AP, Levy RA. 2004. Genes, culture, and medicines: Bridging gaps in treatment for Hispanic Americans. Washington, DC: National Alliance for Hispanic Health, 32 pp.

Annotation: This report brings together a growing body of scientific research demonstrating substantial disparities in pharmaceutical therapy for Hispanic Americans. The report discusses disparities in relation to asthma and Hispanic children, mental illness, and status of research; genetics and individualized response to drugs in Hispanics in relation to asthma, diabetes, heart attack, and Alzheimers disease; clinical implications of variations in genes regulating drug metabolism; undertreatment of coexisting conditions; and communication, culture, and implications of optimal pharmaceutical care. Statistical information is presented in figures throughout the report. The report includes conclusions, recommendations, and references.

Keywords: Alzheimers disease, Asthma, Children, Communication, Cultural factors, Culture, Diabetes, Drug therapy, Genetics, Heart diseases, Hispanic Americans, Mental disorders, Pharmaceuticals, Research, Treatment

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.

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

Burke W, Fryer-Edwards K, Pinsky LE, eds. 2001. Genetics in primary care (GPC): Training program curriculum materials. (Rev. ed.). Austin, TX: National Newborn Screening and Genetics Resource Center, 146 pp. (Genetics in primary care (GPC): A faculty development initiative)

Annotation: This curriculum is designed to serve as a bridge between primary care and genetics. The curriculum includes modules focusing on the following eight areas: (1) breast/ovarian cancer, (2) cardiovascular disease, (3) colorectal cancer, (4) congenital hearing loss, (5) dementia, (6) developmental delay, (7) iron overload, and (8) ethical, legal, and social issues. Each module includes teaching cases with questions and discussion to illustrate genetic themes and diagnoses. Each module also includes references to key documents and useful Web sites for additional background information. An overview of the Genetics in Primary Care (GPC) program and a list of its members from 1998-2001 are provided. [Funded in part by the Maternal and Child Health Bureau]

Keywords: Breast cancer, Cardiovascular disease, Colon cancer, Curricula, Developmental disabilities, Ethics, Genetics, Hearing disorders, Iron overload diseases, Legal issues, Mental disorders, Ovarian cancer, Primary care, Professional education materials

Massad J, Oles B, Roeber C, Tashima N, Crain C. 2001. Genetics literacy project: Consumer organization study report. Takoma Park, MD: LTG Associates, 1 v.

Annotation: This report presents research examining the efforts of organizations serving the needs of families and individuals affected by genetic conditions. This research is one phase in the development of a toolkit to guide efforts to conduct education and outreach on genetics and health care to promote informed health care decisions, particularly for the underserved. This current phase of research is focused specifically on efforts of organizations to meet the needs of individuals and families affected by known genetic conditions.The report is organized into three main sections. Section 1 discusses issues related to the content of outreach materials produced, the development of these materials, modes of dissemation to consumers, and the gneral health outreach context in which they operate. Section 2 discusses lessons learned by consumer organizations that have direct bearing on outreach efforts. Section 3 discusses specific next steps to be carried out as the research project moves forward. [Funded by the Maternal and Child Health Bureau]

Keywords: Development, Education, Educational materials, Families, Genetic disorders, Genetics, Health care, Outreach, Research, Underserved communities, Writing

Institute for Child Health Policy and Johnson K. 1999. Incorporating genetic medicine and technology into practice and service: Conference proceedings, program, and directory. Gainesville, FL: Institute for Child Health Policy, 93 pp.

Annotation: This document is the conference proceedings, program, and directory from the U.S. Maternal and Child Health Bureau (MCHB) Invitational Meeting on the topic of genetic medicine and technology held in November, 1999, in Arlington, Virginia. It includes a brief history of the MCHB Genetic Services Branch and a discussion of the National Agenda for Children with Special Health Care Needs (CSHCN) as part of the Healthy People 2010 objectives. It also provides agendas and summaries of the three meeting tracks whose themes were translating recommendations into action, promotion of the early identification of CSHCN needs through infrastructure development, and improvement and integration of health services for infants and children with genetic conditions. Speaker/staff biographies, a guest directory, a list of MCHB SPRANS genetics projects, and fact sheets on family-centered care for CSHCN and cultural competency are also included. [Funded by the Maternal and Child Health Bureau]

Keywords: Children with special health care needs, Culturally competent services, Early intervention, Family centered care, Genetic disorders, Genetic services, Genetics, Health services delivery, Healthy People 2010, SPRANS, Technology

Andrews LB, Fullarton JE, Holtzman NA, Motulsky AG, eds. 1994. Assessing genetic risks: Implications for health and social policy. Washington, DC: National Academy Press, 338 pp.

Annotation: This book is intended for the use of health professionals, policy makers, and the general public who are interested in the evolving field of genetic research. The book offers principles for actions and research and policy recommendations on key issues in genetic testing. Advantages to be gained by testing are considered, and social issues that will be affected by the use of genetic testing are reviewed. Among these are the availability of treatment, privacy, confidentiality and discrimination, personal decision-making, public health objectives, costs, and financing.

Keywords: Genetic disorders, Genetics, Health policy, Research, Risk factors, Social policy

Kuliev A, Greendale K, Penchaszadeh V, Paul NW, eds. 1992. Genetic services provision: An international perspective. White Plains, NY: March of Dimes Birth Defects Foundation, 141 pp. (Birth defects: Original article series; v. 28, no. 3)

Annotation: This publication presents the proceedings from an international meeting on genetic services provision held prior to the 8th International Congress of Human Genetics on October 4, 1991, in six languages including English and Spanish. The fifteen papers included discuss progress in the diagnosis, prevention, and treatment of congenital disorders, as well as with organizational problems relevant to the delivery of genetic services and the associated social and ethical issues. Specific topics include the impact of genetic diseases and birth defects monitoring systems, thalassemia, Down syndrome, genetic screening, evaluation of services, and new technologies. Geographic areas covered include Latin America, Cyprus, Denmark, Cuba, Federal Republic of Germany, and Bahia, Brazil.

Keywords: Congenital abnormalities, Genetic disorders, Genetic services, Genetics, International health, Non English language materials, Prenatal diagnosis, Research, Spanish language materials

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.

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

National Center for Education in Maternal and Child Health. 1985 (ca.). Human genetics: Educational materials for the classroom. Arlington, VA: National Center for Education in Maternal and Child Health, 14 pp.

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

Mittman IS, PenchaszadehVB, Secundy MG, eds. The national dialogue on genetics. Community Genetics. 1(3):115-201. 1998,

Annotation: This special issue is the conference proceedings of the National Dialogue on Genetics held in College Park, Maryland in 1998. The conference was intended as a forum for debate by the professional and scholarly communities on issues pertaining to human genetics research and the lack of participation of minorities in genetic services. Participants in the conference presented a variety of papers on the following topics: consumer perspectives on genetic testing; research and services for ethnoculturally diverse populations including Asian Americans and Pacific Islanders; genetics issues for U.S. racial and ethnic minorities including Native American and Latino populations; minority health issues; when genetic screening should be offered; the Jewish community and genetics research; genetic education using community empowerment; improving access to genetic services; privacy and antidiscrimination issues; recruiting minorities to studies of ethics and values; a case study of genetic testing; and a national dialogue on genetics and minority issues. The issue is accessible by author and subject indexes. [Funded by the Maternal and Child Health Bureau]

Keywords: American Indians, Asian Americans, Blacks, Communities, Conference proceedings, Congenital abnormalities, Ethnic factors, Genetic disorders, Genetic predisposition, Genetic screening, Genetic services, Genetics, Hispanic Americans, Jews, Maternal and Child Health Bureau, Minority health, Pacific Islanders, Racial factors, genetics
   

The MCH Library is one of six special collections at Georgetown University, the nation's oldest Jesuit institution of higher education. The library is supported through foundation, private, university, state, and federal funding. This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by Georgetown University or the U.S. Government. Note: web pages whose development was supported by federal government grants are being reviewed to comply with applicable Executive Orders.