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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 21 through 40 (108 total).

Woodrow Wilson School of Public and International Affairs and Brookings Institution. 2005. School readiness: Closing racial and ethnic gaps. Princeton, NJ: Woodrow Wilson School of Public and International Affairs; Washington, DC: Brookings Institution, 196 pp. (The future of children; v. 15, no. 1, Spring 2005)

Annotation: This issue of "The Future of Children" focuses on school readiness. The articles in the issue address the following questions. How large are the racial and ethnic gaps in school readiness? How much of the gap is due to differences in children's socioeconomic background or to genetics? How much do disadvantages like poor health, poor parenting, low-quality preschool child care, and low birthweight contribute to the gaps? What lessons can we learn from new research in brain development? And, what do we know about what works and what does not work in closing the gaps?

Contact: Future of Children, Princeton School of Public and International Affairs, Princeton University, 267 Wallace Hall, Princeton, NJ 08544, Telephone: (609) 258-5894 E-mail: [email protected] Web Site: https://futureofchildren.princeton.edu/ Available from the website.

Keywords: Child care, Child development, Child health, Children, Ethnic factors, Families, Genetics, Low birthweight, Parenting, Parents, Preschool children, Racial factors, School readiness

North Carolina Task Force on Genomics and Public Health. 2004. North Carolina public health: Genomics plan. [Raleigh, NC]: North Carolina Department of Health and Human Services, Office of Genomics, 27 pp.

Annotation: This report provides guidance to North Carolina as the scientific discoveries of the genomic revolution move from the laboratory into clinical and public health medicine. The report contains a set of recommendations in several broad areas of concern (communication and education, epidemiology and surveillance, genetic testing and services, and future directions) and with each recommendation suggests initial action steps to help the state move toward the objective. The report, which includes an executive summary, explains what genomics is, describes the development of the state plan, and lists the primary goals of the plan. A conclusion is also included. The report contains four appendices: a genomics needs executive summary, a glossary, notes and references, and acknowledgments. [Funded by the Maternal and Child Health Bureau]

Keywords: Communication, Education, Epidemiology, Genetic screening, Genetic services, Genetics, North Carolina, Population surveillance, Public health, Statewide planning

Gwinn M, Bedrosian S, Ottman D, Khoury MJ, eds. 2004. Genomics and population health: United States 2003. Atlanta, GA: Centers for Disease Control and Prevention, Office of Genomics and Disease Prevention, 112 pp.

Annotation: This report, which is intended for public health professionals who are interested in integrating genomics into health promotion, disease prevention, and health care, includes information on what is currently relevant in the field of genomics and population health. The report presents some examples to show how public health is beginning to address three major gaps in the knowledge needed for successful translation of new research results into population health benefits. These examples include conducting genomics and population health research, developing evidence on the value of genomic information, and integrating genomic information into practice and programs. The report presents population-based data when available, describes potential applications to public health and prevention practice, and offers interpretation. A glossary and a list of authors are included.

Contact: Centers for Disease Control and Prevention, Office of Public Health Genomics , 1600 Clifton Road, Atlanta, GA 30329-4027, Telephone: (800) 232-4636 Secondary Telephone: (888) 232-6348 E-mail: [email protected] Web Site: http://www.cdc.gov/genomics Available from the website.

Keywords: Disease prevention, Genetics, Genomics, Health care, Health promotion, Public health, Research

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.

Contact: National Alliance for Hispanic Health, 1501 16th Street, N.W., Washington, DC 20036-1401, Telephone: (202) 387-5000 Secondary Telephone: (866) 783-2645 Fax: E-mail: Web Site: http://www.hispanichealth.org Available from the website.

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

American Society of Human Genetics. 2004. Enhancement of K-12 human genetics education: Creating a cooperative plan. [Bethesda, MD]: American Society of Human Genetics, 16 pp.

Annotation: This report provides information about a meeting convened in Bethesda, Maryland, on September 9-10, 2004, in recognition of the need to develop a cooperative plan to enhance human genetics education in classrooms, disseminate information, and generate interest among students in careers in human genetics and related fields. The report discusses differing perspectives on human genetics and genetics community resources. A brief summary of the meeting discussion is included, along with a table outlining what geneticists can do for students in different grades.

Contact: American Society of Human Genetics, 9650 Rockville Pike, Bethesda, MD 20814, Telephone: (301) 634-7300 Secondary Telephone: (866) HUM-GENE Fax: (301) 634-7079 Web Site: http://www.ashg.org/ Available from the website.

Keywords: Careers, Elementary school, Geneticists, Genetics education, High school students, Middle school, School-age children

Kahn NB. 2003. Genetics in Primary Care (GPC): A faculty development initiative—[Final report]. Leawood, KS: Society of Teachers of Family Medicine, 58 pp., exec. sum. (21 pp.).

Annotation: This report chronicles the activities of the Genetics in Primary Care (GPC) project over three phases which spanned five years. Topics include how to better teach students, residents, and faculty about genetics in primary care; the training of faculty teams from around the country; the development of curricula and teaching products; and recommendations for future directions. Issues which arose through the implementation are discussed, and outcomes are detailed. Conclusions and recommendations emerging from the project experience are provided for the government's consideration as strategies for primary care education with regard to genetics. The report also includes an executive summary and two attachments which list the advisory committee organizations and project members. [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 Available from the website.

Keywords: Final reports, Genetics education, MCH research, Primary care, Professional education, Professional training, Program descriptions

North Carolina Department of Health and Human Services, Office of Genomics and North Carolina Center for Genomics and Public Health. 2003. Statewide needs assessment for a comprehensive genomics plan. [Chapel Hill, NC: North Carolina Institute for Public Health?], ca. 75 pp.

Annotation: This report focuses on work done by a needs assessment workgroup formulated by the North Carolina Division of Public Health, North Carolina Task Force on Genomics and Public Health. The workgroup's task was to perform a review of current genetic screening and service programs in the state. The report is divided into sections according to the areas examined by the workgroup: public health assessment, evaluation of genetic testing and services, and communication and information dissemination services. Each section describes the current system and programs, identifies challenges, and makes recommendations. In addition, the report provides initial questions for future directions. The report includes seven appendices: a workgroup framework, data sources and methods, a newborn screening follow-up program flowchart, useful Web sites, a Medical Genetics Association survey and results, genomic competencies, and core competencies in genetics. [Funded by the Maternal and Child Health Bureau]

Keywords: Communication, Evaluation, Genetic screening, Genetic services, Genetics, Information dissemination, Needs assessment, North Carolina, Public health, State programs, Statewide planning

Bach J. 2003. The Michigan genetics plan: Assessment of service and infrastructure needs. Lansing, MI: Michigan Department of Community Health, 10 pp., plus appendices.

Annotation: This report describes a project conducted from 2001 to 2003 in Michigan to bring planning for a comprehensive state genetics plan for Michigan to an orderly conclusion, disseminate the results, and transition to implementation. Report contents include a description of the purpose of the project, goals and objectives, methodology, evaluation, results and outcomes, publications and products, dissemination and utilization of results, future plans and follow-up, and type and amount of support and resources needed to replicate. The report includes five appendices: (1) a needs assessment and state genetics plan, (2) an executive summary, (3) a needs assessment poster, (4) a PowerPoint presentation on genetics and public health, and (5) a flyer advertising a DNA Day open house. [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 Available from the website.

Keywords: Comprehensive health care, Final reports, Genetics, Michigan, Program planning, State programs

Jernell J. 2003. Development of a state genetics plan for Minnesota: Final report. St. Paul, MN: Newborn Screening and Child Health Unit, Minnesota Department of Health, ca. 75 pp.

Annotation: This final report describes a project that focused on the development of a state genetics plan for Minnesota during the period October 1, 1997-June 30, 2002. The state plan addresses the provision of integrated services to children identified via newborn screening programs, provides a framework for ongoing performance measures related to newborn screening, assesses the feasibility of linking datasets to assure referral to appropriate services, and addresses expansion of newborn screening. Report sections include (1) purpose of project , (2) goals and objectives, (3) methodology, (4) evaluation, (5) results and outcomes, (6) publications and products, (7) dissemination and utilization of results, (8) future plans and follow-up, and (9) type and amount of support and resources needed to replicate. An abstract is included. The report includes 14 appendices that provide charts, surveys, newsletter issues, and other supplemental information. [Funded by the Maternal and Child Health Bureau]

Contact: Minnesota Department of Health, Maternal and Child Health Section, P.O. Box 64882, St. Paul, MN 55164-0882, Telephone: (651) 201-3760 Fax: (651) 201-3590 Web Site: http://www.health.state.mn.us/divs/cfh/program/mch/index.cfm

Keywords: Final reports, Genetics, Minnesota, Neonatal screening, State programs

Hustead JL, Cunningham A, Goldman J. 2002. Genetics and privacy: A patchwork of protections. Oakland, CA: California HealthCare Foundation, 43 pp.

Annotation: The purpose of this report is to explain the state of genetic science and define some genetic-related common terms; to discuss how the privacy of genetic information is and is not protected; to examine the role of the Internet; and to identify large gaps in national policy that leave genetic information exposed to misuse. Section topics include a primer on genetic testing; the legal basis for genetic privacy; the Internet in health care and privacy issues; and closing the privacy gaps. The appendices provide information on basic genetic terms, gene discovery and disease, genetic testing in general, the uses of genetic tests, and the complexity of predictive and carrier genetic testing. Endnotes complete the report.

Contact: California HealthCare Foundation, 1438 Webster Street, Suite 400, Oakland, CA 94612, Telephone: (510) 238-1040 Fax: (510) 238-1388 Web Site: http://www.chcf.org Available at no charge; also available from the website. Document Number: ISBN 1-929008-94-5.

Keywords: Confidentiality, Genetic screening, Genetics, Internet, Legislation

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

National Institute of Child Health and Human Development. 2001, reprinted 2003. Genetics and fetal antecedents of disease susceptibility. Rockville, MD: National Institute of Child Health and Human Development, 17 pp. (From cells to selves)

Annotation: This publication discusses the interaction of the genotype with socioeconomic, environmental, and psychological factors in the fetal and postnatal environment that contribute to an individual's health or susceptibility to disease. Report contents include the strategic planning process, goals and objectives, scope of the plan, scientific context and opportunities, research priorities, infrastructure priorities, and priority methodology and policy issues. The appendix includes the roster of advisors.

Contact: Eunice Kennedy Shriver National Institute of Child Health and Human Development, Information Resource Center, P.O. Box 3006, Rockville, MD 20847, Telephone: (800) 370-2943 Secondary Telephone: Fax: (866) 760-5947 E-mail: [email protected] Web Site: http://www.nichd.nih.gov Available from the website.

Keywords: Congenital abnormalities, Environmental health, Genetics, Hereditary diseases, Morbidity, Mortality, Patient education materials, Psychological needs, Socioeconomic factors

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]

Contact: National Newborn Screening and Genetics Resource Center, University of Texas Health Science Center at San Antonio, 1912 West Anderson Lane, Suite 210, Austin, TX 78757, Telephone: (512) 454-6419 Fax: (512) 454-6509 E-mail: [email protected] Web Site: http://genes-r-us.uthscsa.edu Available from the website.

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

Roeber C, Oles B, Massad J. 2001. Genetics literacy project: Literature and materials review. Takoma Park, MD: LTG Associates, 2 v.

Annotation: This two-volume document includes a report and a research bibliography prepared as an initial step toward the development of culturally appropriate outreach to promote genetics literacy. The first volume includes a report centering on three questions: (1) What kinds of information on genetics and health currently exist? (2) When do people encounter information about genetics and health care? (3) How do people find information on health care, and on genetic health care in particular? The report concludes with two appendices providing a glossary and annotated resources from the Internet and World Wide Web. The second volume contains all references that were collected during the literature and materials review of volume one, including books, peer reviewed journal articles, government reports, conference proceedings, online magazine articles, education program materials, and popular news media. [Funded in part by the Maternal and Child Health Bureau]

Contact: National Newborn Screening and Genetics Resource Center, University of Texas Health Science Center at San Antonio, 1912 West Anderson Lane, Suite 210, Austin, TX 78757, Telephone: (512) 454-6419 Fax: (512) 454-6509 E-mail: [email protected] Web Site: http://genes-r-us.uthscsa.edu Available from the website.

Keywords: Bibliographies, Cultural sensitivity, Culturally competent services, Genetics, Genetics education, Literature reviews, Outreach, Professional education materials, Research, World Wide Web

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]

Contact: National Newborn Screening and Genetics Resource Center, University of Texas Health Science Center at San Antonio, 1912 West Anderson Lane, Suite 210, Austin, TX 78757, Telephone: (512) 454-6419 Fax: (512) 454-6509 E-mail: [email protected] Web Site: http://genes-r-us.uthscsa.edu Available from the website.

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

Iowa Department of Public Health, State Coordinator for Genetic Services. 2001. The state genetics plan for Iowa: A plan of action for the Iowa Department of Health. Des Moines, IA: Iowa Department of Public Health, State Coordinator for Genetic Services, 21 pp.

Annotation: This report provides an action plan for the Iowa Department of Public Health to facilitate further genetic and public health collaboration and to help ensure comprehensive genetic health care, education, diagnosis, treatment, and support services for all Iowans. The plan summarizes the results of a 2000 analysis of the genetic health care, laboratory, and surveillance programs and outlines the priority issues identified during the evaluation period. Recommended strategies and goals are provided throughout the report. [Funded by the Maternal and Child Health Bureau]

Contact: Iowa Department of Public Health, 321 East 12th Street, Des Moines, IA 50319-0075, Telephone: (515) 281-7689 Secondary Telephone: (866) 227-9878 E-mail: https://www.idph.iowa.gov/Contact-Us Web Site: https://hhs.iowa.gov/ Available from the website.

Keywords: Evaluation, Genetic services, Genetics, Iowa, State programs, Strategic plans

Johnson Group Consulting. 2000?. Proceedings of the state genetics planning grantees meeting, September 2000, Ann Arbor, Michigan. Rockville, MD: U.S. Maternal and Child Health Bureau, 37 pp.

Annotation: These proceedings are from a meeting of teams from 10 states that received planning grants in fiscal year 2000 for genetic plans. Intended for grantees, the meeting provided information about integrating programs, information systems and registries; developing information systems capacity; evaluating programs; and developing community partnerships. The meeting also focused on the core components of a plan. Attendees included state agency staff members, consumers from advocacy organizations, and health professionals. A list of print resources for state genetic planners and Internet resources regarding genetics and public health are included in the document. [Funded by the Maternal and Child Health Bureau]

Keywords: Conference proceedings, Genetics, Planning, State grants, Statewide planning

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

Shonkoff JP, Phillips DA, eds. and Board on Children, Youth, and Families, Committee on Integrating the Science of Early Childhood Development. 2000. From neurons to neighborhoods: The science of early childhood development. Washington, DC: National Academy Press, 588 pp.

Annotation: This book is a report of a two- and-a-half year project in which the Committee on Integrating the Science of Early Childhood Development, established by the Board on Children, Youth, and Families of the National Research Council and the Institute of Medicine, was given the task of updating and evaluating the current science of early childhood development. The committee reviewed a body of research covering the period from before birth to the first day of kindergarten. The report introduces the concepts of the study. It discusses the nature and tasks of early development and the context for early development. The report includes conclusions, recommendations, references and an index. The appendices include: A. Related reports from the National Academies; B. Defining and estimating causal effects; C. Technologies for studying the developing human brain; and D. Biographical sketches of committee members. [Funded in part by the Maternal and Child Health Bureau]

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 Available in libraries. Document Number: ISBN 0-309-06988-2.

Keywords: Behavioral sciences, Developmental psychology, Early childhood development, Genetics, Infants, Neural development, Social sciences, Studies, Young children

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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.