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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 9 (9 total).

U.S. Government Accountability Office. 2010. Direct-to-consumer genetic tests: Misleading test results are further complicated by deceptive marketing and other questionable practices—Testimony. Washington, DC: U.S. Government Accountability Office, 29 pp.

Annotation: This testimony before the House of Representative's Subcommittee on Oversight and Investigations, Committee on Energy and Commerce, summarizes findings from an investigation conducted by the Government Accountability Office (GAO) on the reliability of test results from direct-to-consumer genetic tests and the marketing and advertising used to sell these products. Included is a full description of the study conducted by GAO in 2006 and the results of their findings.

Contact: U.S. Government Accountability Office, 441 G Street, N.W., Washington, DC 20548, Telephone: (202) 512-3000 Secondary Telephone: E-mail: [email protected] Web Site: http://www.gao.gov Available from the website.

Keywords: Consumer protection, Federal initiatives, Genetic predisposition, Investigations, Marketing, Research, Testing

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

Wilker NL, Davidson ME, Holmes C, Isaacs C, Little B, Smith ACM, Stewart M. [1998]. Report to NYLCare Health Plans Medical Affairs Department: Opportunities to enhance NYLCare's genetics service delivery system. Washington, DC: Alliance of Genetic Support Groups, 26 pp.

Annotation: This report discusses the activities of the Partnership for Genetics Services Pilot Program over a 2-month period to understand the involvement of the corporate Medical Affairs Department in the delivery of services to individuals with, or at risk for, genetic conditions and their families. The report includes the following components: (1) an analyis of interview findings regarding staff responsibilities, resources, challenges, and service delivery; (2) an outline of opportunities for possible next steps, (3) a presentation of the initial data collected, (4) a sketch of the prevalence of some common genetic conditions, (4) two case studies, and (5) examples of available resources. [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: Case studies, Families, Genetic counseling, Genetic disorders, Genetic predisposition, Genetic services, Health services delivery

U.S. Department of Health and Human Services, Office of the Secretary. 1997. Health insurance in the age of genetics: Report of the Secretary to the President. Bethesda, MD: U.S. Department of Health and Human Services, National Human Genome Research Institute, 16 pp.

Annotation: This report looks at the problem of genetic discrimination by health insurance companies and the need for federal legislation to prevent this. It looks at the progress and promise of genetic testing, the perils of genetic discrimination, why current state law is inefficient, the gaps in the current federal legislation and recommendations, and congressional initiatives.

Contact: National Human Genome Research Institute, National Institutes of Health, Building 31, Room 4B09, MSC 2152, 9000 Rockville Pike, Bethesda, MD 20892-2152, Telephone: (301) 402-0911 Fax: (301) 402-2218 E-mail: Web Site: http://www.nhgri.nih.gov Price unknown.

Keywords: Federal legislation, Genetic predisposition, Genetic screening, Health insurance

NIH-DOE Working Group on Ethical, Legal, and Social Implications of Human Genome Research, Task Force on Genetic Information and Insurance. 1993. Genetic information and health insurance: Report of the Task Force on Genetic Information and Insurance. Bethesda, MD: U.S. Department of Health and Human Services, National Center for Human Genome Research, 32 pp.

Rivinus TM, ed. 1991. Children of chemically dependent parents: Multiperspectives from the cutting edge. New York, NY: Brunner/Mazel, 364 pp.

Annotation: This collection of essays provides both a comprehensive overview and a detailed analysis of treatment options for children of substance abusers. The book addresses developmental issues for young children, adolescents, and adult children of alcoholics. Individual chapters focus on genetic factors, psychoeducational therapy, codependence and narcissism, resiliency, chronic trauma disorder of childhood, and the effect of 12-step programs on current medical practice. Concluding essays discuss the policy and legal implications of such issues as mandatory genetic screening for children of substance abusers.

Keywords: Alcoholic parents, Alcoholism, Children, Children of alcoholics, Counseling, Dysfunctional families, Evaluation, Family relations, Genetic predisposition, Group therapy, High risk populations, Legal issues, Professional ethics, Protective factors, Psychotherapy, Resilience, Screening, Substance abuse, Traumatic neurosis, Treatment outcome

Morton CJ, Balassone ML, Guendelman SR. 1987. Preventing low birthweight and infant mortality: Programmatic issues for public health social workers. Berkeley, CA: University of California, School of Public Health, Maternal and Child Health Program, 238 pp.

Annotation: This book examines the prevention of low birthweight and infant mortality from both the policy and program level. The first section of the publication examines the social and health policy issues relating to adequate income and access to care. The second section focuses on risk assessment as an important tool in prevention. The middle section focuses on program evaluation, beginning with an explanation of differential social program evaluation. The section also presents the methodology being used to evaluate four early intervention programs instituted to reduce child maltreatment among high risk mothers. The last two sections describe service innovations directed to special populations: pregnant women at risk due to behavioral factors, chemically dependent women, those at genetic risk, adolescents, and new immigrants. [Funded by the Maternal and Child Health Bureau]

Contact: Earl Warren Hall School of Public Health, Maternal and Child Health Program, University of California, Berkeley, 50 University Hall Suite 207, Berkeley, CA 94720, Telephone: (510) 642-1512 Fax: (510) 643-6426 E-mail: [email protected] Available from the website.

Keywords: Access to health care, Adolescents, Child abuse, Family income, Genetic predisposition, Immigrants, Infant mortality, Low birthweight, Mothers, Prevention, Risk assessment, Substance abusing mothers

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

National Library of Medicine. Genetics home reference: Your guide to understanding genetic conditions. Bethesda, MD: National Library of Medicine,

Annotation: This website provides information about the effects of genetic variations on human health. Contents include information about genetic disorders and related genes and chromosomes and concepts and tools for understanding human genetics. Topics include health conditions, diseases, and syndromes; genes, health effects of genetic differences, and gene families; chromosomes, mitochondrial DNA, and associated health conditions; mutations, inheritance, genetic counseling, genetic testing, and genomic research; medical and genetics definitions; and links to other genetics information and organizations.

Contact: National Library of Medicine, U.S. Department of Health and Human Services, 8600 Rockville Pike, Bethesda, MD 20894, Telephone: (301) 594-5983 Secondary Telephone: (888) 346-3656 Fax: (301) 402-1384 E-mail: [email protected] Web Site: http://www.nlm.nih.gov Available from the website.

Keywords: Adverse effects, Consumer education, Genetic counseling, Genetic predisposition, Genetic screening, Genetics, Genomics, Research

   

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.