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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 Library.

Search For: Keyword: Genetic services

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Displaying records 1 through 10 of 104 found.
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Pennsylvania Department of Health. n.d.. Genetic counseling: Can it help you and your family?. Harrisburg, PA: Pennsylvania Department of Health, 8 pp.

Annotation: This pamphlet describes the kinds of problems about which genetic counseling provides information and assistance, lists factors that may place families at risk for genetic disorders or birth defects, describes how genetic counseling works, and lists the comprehensive genetic centers in Pennsylvania. The pamphlet is available in English and Spanish.

Keywords: Genetic counseling, Genetic services, Genetics branch collection, Spanish language materials

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Shields S, Neville P. n.d.. Genetic amniocentesis. Charleston, SC: Medical University of South Carolina, 28 pp.

Annotation: This booklet, written for parents, is to help a couple make an informed decision about genetic amniocentesis. Reasons to seek genetic counseling are given. The procedure is clearly described with photographs of each step of the procedure. The consent form is described. Included are photographs of normal and abnormal chromosome spreads. Parents are warned of mild complications that may arise. The risks of an amniocentesis are listed. Also described are the disorders that an amniocentesis may reveal and what further steps may be taken if a birth defect does appear. This booklet also explains the length of the wait for the results of the test. Funding was provided by the Department of Health and Environmental Control, Children's Rehabilitative Services, Section on Genetics, Columbia, SC 29201.

Contact: Medical University of South Carolina, Department of Pediatrics, Genetics-Birth Defects Center, 171 Ashley Avenue, Charleston, SC 29425, Telephone: 843- 792-2300 Web Site: http://www.musc.edu Available at no charge.

Keywords: Amniocentesis, Genetic services, Genetics branch collection, Prenatal diagnosis

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University of Medicine and Dentistry of New Jersey, New Jersey Medical School, Department of Pediatrics, Division of Human Genetics, Immigrant Outreach Project. n.d.. Packet of sample letters to genetic counseling patients. Newark, NJ: University of Medicine and Dentistry of New Jersey, ca. 200 pp.

Annotation: This packet contains letters to patients summarizing the results of genetic counseling sessions. [Funded by the Maternal and Child Health Bureau]

Keywords: Genetic counseling, Genetic services, Genetics branch collection

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University of Medicine and Dentistry of New Jersey, New Jersey Medical School, Department of Pediatrics, Division of Human Genetics, Immigrant Outreach Project. n.d.. Translated sample letters and forms. Newark, NJ: University of Medicine and Dentistry of New Jersey, ca. 100 pp.

Annotation: This packet contains letters to patients summarizing the results of genetic counseling sessions. Letters are translated into French and Spanish. [Funded by the Maternal and Child Health Bureau]

Keywords: Genetic counseling, Genetic services, Genetics branch collection, Non English language materials, Spanish language materials

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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.

Contact: American College of Medical Genetics, 7220 Wisconsin Avenue, N.W., Suite 300, Bethesda, MD 20814, Telephone: (301) 718-9603 Fax: (301) 718-9604 E-mail: acmg@acmg.net Web Site: http://www.acmg.net/

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

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Genetic Alliance. [2011]. Baby's first test. [Washington, DC]: Genetic Alliance,

Annotation: This website provides information on newborn screening primarily for expecting and new parents. Resources are also available for prenatal and pediatric health professionals, including information about dried blood spot storage and usage. The content is based on 2008 legislation (the Newborn Screening Saves Lives Act) to expand support, research, and education opportunities for newborn screening. The website is organized as follows: About Newborn Screening (newborn screening facts, genetic and family history, screening resources, conditions screened by state); What to Expect (before birth, testing procedure, responding to results, testing outcomes, and what happens to the blood sample); Find a Condition; and Living with Conditions (family experiences, talking about a diagnosis, advocacy and support groups, finding a specialist, insurance and planning, looking to the future). [Funded 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: info@geneticalliance.org Web Site: http://www.geneticalliance.org Available at no charge.

Keywords: Blood tests, Educational materials, Family support, Genetic services, Newborn infants, Resources for professionals, Screening, Special health care needs

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National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives. 2011. NCC/RC PD/PM annual meeting [participant's notebook]. [Bethesda, MD]: National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives, 1 v.

Annotation: This binder contains items for participants in the annual meeting held November 17-18, 2011 in Bethesda, Maryland to discuss the role of genetic services and resources in public health. Meeting topics include the use of social media, quality improvement, healthcare reform, informed consent, embracing primary care providers beyond pediatrics, and case diagnosis definitions. The binder includes printouts of PowerPoint presentations, timelines, and project listings and descriptions. [Funded in part by the Maternal and Child Health Bureau]

Contact: National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives, c/o American College of Medical Genetics and Genomics, 7220 Wisconsin Avenue, Suite 300, Bethesda , MD 20814, Telephone: (301) 718-9603 Fax: (301) 718-9604 E-mail: ncc@nccrcg.org Web Site: http://www.nccrcg.org

Keywords: Genetic counseling, Genetic screening, Health services, Meetings, Primary care

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[Doyle DL, Watts C]. [2008]. Genetic Services Policy Project: Final report. [Seattle, WA]: University of Washington School of Public Health, Resource Center for Health Policy and Community Medicine and Washington State Department of Health, 199 pp.

Annotation: This report describes a project from 2004-2008 to evaluate how the current genetic service delivery model works, what alternative models exist that may work better, how research relevant to genetic services can be best translated into practice, and what public policy changes are needed to improve genetic services. Report topics include genetics in several types of conditions, the role of cost-effectiveness analysis in decision making about genetic services, analysis of media messages about genetics, personal genomic services and direct access genetic test, a changing health care world, and recommendations. Appendices provide additional analysis, a case study, and a look at the emerging landscape of genetic services. [Funded by the Maternal and Child Health Bureau]

Contact: University of Washington, School of Public Health, Box 357230, Seattle, WA 98195-3813, Telephone: (206) 543-1144 Fax: (206) 543-3813 E-mail: publichealth@uw.edu Web Site: http://sph.washington.edu/index.asp Available from the website.

Keywords: Final reports, Genetic services, Health services delivery, MCH Research, Program descriptions, Public policy, Trends, Washington

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Garcia G. [2008]. A challenge to the delivery of genetic services: Liability for negligent delivery of reproductive services. [Seattle, WA]: University of Washington School of Public Health, Resource Center for Health Policy and Community Medicine and Washington State Department of Health, 16 pp.

Annotation: This white paper offers an overview of the scope of civil liability arising from genetic screening, testing, and counseling in the area of reproductive services. The paper was prepared in conjunction with the Genetic Servics Policy Project. The paper provides (1) a brief overview of the categories of liability and the legal theory most likely to apply to genetic services, (2) examples for each of the categories listed, (3) the legal trend of civil liability in cases involving reproductive services, and (4) present and future liability beyond reproductive genetic services. [Funded by the Maternal and Child Health Bureau]

Contact: University of Washington, School of Public Health, Box 357230, Seattle, WA 98195-3813, Telephone: (206) 543-1144 Fax: (206) 543-3813 E-mail: publichealth@uw.edu Web Site: http://sph.washington.edu/index.asp Available from the website.

Keywords: Genetic counseling, Genetic screening, Genetic services, Liability, Reproductive health, Trends

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Genetic Services Policy Project. [2008]. Genetic Services Policy Project final report. Seattle, WA: Genetic Services Policy Project, 199 pp.

Annotation: This final report describes work performed from 2004-2008 as part of the Genetic Services Policy Project (GSPP). It discusses the delivery of genetic services in the United States, gives policy briefs and vignettes of several conditions (breast cancer, cystic fibrosis, multiple congenital anomalies, sickle cell disease, and type 2 diabetes), and discusses the role of cost-effectiveness analysis in decision making about genetic services. In addition it provides an analysis of media messages about genetics and discusses personal genomics services and direct access genetic tests, as well as the changing health care world. Recommendations are included. [Funded in part by the Maternal and Child Health Bureau]

Contact: Genetic Services Policy Project , University of Washington, 1107 NE 45th Street, Suite 400 , Seattle, WA 98105 , Telephone: (206) 685-2371 Fax: (206) 543-9345 E-mail: genpol@u.washington.edu Web Site: http://depts.washington.edu/genpol/about/ Available from the website.

Keywords: Case studies, Cost effectiveness, Final reports, Genetic services

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