Genomes and Genes
Summary: Organized services to provide diagnosis, treatment, and prevention of genetic disorders.
Publications214 found, 100 shown here
- Too many referrals of low-risk women for BRCA1/2 genetic services by family physiciansDella Brown White
Social and Behavioral Research Branch, National Human Genome Research Institute, NIH, 31 Center Drive, Building 31, Room B1B54G, Bethesda, MD 20892 2073, USA
Cancer Epidemiol Biomarkers Prev 17:2980-6. 2008..availability and public awareness of BRCA1/2 genetic testing will increase women's self-referrals to genetic services. The objective of this study was to examine whether patient characteristics influence the referral decisions ..
- Chromosomal microarray analysis of consecutive individuals with autism spectrum disorders or learning disability presenting for genetic servicesJennifer L Roberts
Departments of Psychiatry, Behavioral Sciences and Pediatrics, The University of Kansas, Medical Center, Kansas City, KS, USA
Gene 535:70-8. 2014..referred with either autism or autism spectrum disorders (ASD) or developmental delay/learning disability for genetic services at the University of Kansas Medical Center during the past 4 years (2009-2012)...
- Barriers to the provision of genetic services by primary care physicians: a systematic review of the literatureSandy Suther
Department of Health and Kinesiology, Texas A and M University, College Station, Texas 77843 4243, USA
Genet Med 5:70-6. 2003The purpose of this literature review is to report primary care physicians' perceived barriers concerning the provision of genetic services.
- Genetic services in Latin AmericaVictor B Penchaszadeh
Community Genet 7:65-9. 2004..defects and genetic disorders have increased their share of morbidity and mortality, and tertiary-care-based genetic services have developed in urban areas...
- The information and support needs of women at high risk of familial breast and ovarian cancer: how can cancer genetic services give patients what they want?Rachel Iredale
Fam Cancer 2:119-21. 2003
- Direct-to-consumer sales of genetic services on the InternetSarah E Gollust
Medical Genetics Branch, National Human Genome Research Institute, Warren G Magnuson Clinical Center, National Institutes of Health, Bethesda, Maryland 20892, USA
Genet Med 5:332-7. 2003..direct-to-consumer marketing for genetic testing, suggests the potential for the Internet to be used to sell genetic services. METHODS A systematic World Wide Web search was conducted in May 2002 to assess the availability of genetic ..
- Risk communication strategies: state of the art and effectiveness in the context of cancer genetic servicesClaire Julian-Reynier
1INSERM U379, Epidemiology and Social Sciences Applied to Medical Innovation, Institut Paoli Calmettes, Marseille, France
Eur J Hum Genet 11:725-36. 2003..In conclusion, this paper adds clinical relevance to the research evidence. We propose specific steps that could be integrated in standard clinical practice based on current evidence for their usefulness/effectiveness...
- Ethnicity, equity, and access to genetic services--the UK perspectiveP Mehta
Genetic Interest Group, London, UK
Ann Hum Biol 32:204-10. 2005..This short report explores the implications of a diverse population on health and access to genetic services. It considers genetic, cultural and linguistic differences, and provides evidence of inequalities in access...
- Identifying future models for delivering genetic services: a nominal group study in primary careGlyn Elwyn
Centre for Health Sciences Research, Cardiff University, 56 Park Place, Cardiff, CF10 3AT, Wales
BMC Fam Pract 6:14. 2005..To enable primary care medical practitioners to generate a range of possible service delivery models for genetic counselling services and critically assess their suitability...
- Integrating genetics as practices of primary careRosemary Robins
Department of History and Philosophy of Science, University of Melbourne, VIC 3010, Australia
Soc Sci Med 59:223-33. 2004..Preparing GPs to 'do' genetics when the need arises by finding ways to make genetics information available to them as the need arises would facilitate the integration of genetics as practices of primary care...
- Genetic services for familial cancer patients: a follow-up survey of National Cancer Institute Cancer CentersMeira Epplein
Cancer Prevention Program, Division of Public Health Sciences, Fred Hutchinson Cancer Research Center, Seattle, WA 98109 1024, USA
J Clin Oncol 23:4713-8. 2005..As a follow-up to our 1993 survey, we sought to determine how the scope and volume of genetic services has changed between 1993 and 2002.
- Ethics and practice: two worlds? The example of genetic counsellingKerstin Wustner
University of Augsburg, Germany
New Genet Soc 22:61-87. 2003..Then, we discuss what these principles might mean, when applied to the practice of counselling. To do so, we also look at some empirical data. Finally, we draw some conclusions...
- Social contract theory and just decision making: lessons from genetic testing for the BRCA mutationsBryn Williams-Jones
Centre for Family Research, Faculty of Social and Political Sciences, University of Cambridge, UK
Kennedy Inst Ethics J 14:115-42. 2004....
- Molecular genetic testing for ultra rare diseases: models for translation from the research laboratory to the CLIA-certified diagnostic laboratoryS Das
Department of Human Genetics, University of Chicago, Chicago, Illinois 60637, USA
Genet Med 10:332-6. 2008....
- Genetic services in Mexico CitySusana Kofman-Alfaro
Department of Genetics, General Hospital of Mexico, Faculty of Medicine, Universidad Nacional Autonoma de Mexico, Mexico City, Mexico
Community Genet 7:142-5. 2004..this paper we review the current status of genetic departments in Mexico City, emphasizing the main areas of genetic services offered to the public and involved in research...
- Letter of response to editorial by R. Williamson (September 2003)Agnes Bankier
J Paediatr Child Health 40:328; author reply 328. 2004
- Genetic services in EcuadorCesar Paz-y-Mino
Laboratorio de Genética Molecular y Citogenética Humana, Escuela de Biología y Facultad de Medicina, Pontificia Universidad Catolica del Ecuador, Quito, Ecuador
Community Genet 7:137-41. 2004..At the same time, however, chronic diseases, e.g. cancer, have increased in prevalence. Most genetic services are provided by the private sector, which offers clinical genetic consultations and counseling, cytogenetic ..
- Community-based program for the diagnosis and prevention of genetic disorders in Cuba. Twenty years of experienceLuis Heredero-Baute
Department of Clinical Genetics, Hospital Clínico Quirúrgico 10 de Octubre, Havana City, Cuba
Community Genet 7:130-6. 2004The author's experience of 20 years as director of the medical genetic services program in Cuba is presented...
- Genetic services in ChileSilvia Castillo Taucher
Sección Genética, Hospital Clinico Universidad de Chile, Santiago, Chile
Community Genet 7:121-5. 2004..g. the expansion of the newborn screening program and the initiation of a folic acid fortification program, and recent efforts to enhance population access to clinical genetics services...
- Actor-network theory: a tool to support ethical analysis of commercial genetic testingBryn Williams-Jones
Centre for Family Research and Homerton College, University of Cambridge, UK
New Genet Soc 22:271-96. 2003..Such an understanding enables more sophisticated and nuanced technology assessment, academic analysis, as well as public debate about the social, ethical and policy implications of the commercialization of new genetic technologies...
- Nurse-led cancer genetics clinics in primary and secondary care in varied ethnic population areas: interaction with primary care to improve ascertainment of individuals from ethnic minoritiesZohra Gulzar
Clinical Genetics Department, St George s Hospital Medical School, St Georges Hospital NHS Trust, South West Thames Regional Genetics Service, Jenner Wing, Cranmer Terrace, London, SW17 0RE, UK
Fam Cancer 6:205-12. 2007b>Genetic services are receiving increasing numbers of referrals of people with a family history of cancer for assessment of genetic risk, and therefore need to find cost-effective ways of meeting this rising demand...
- Genetic services and research in the state of Minas Gerais, BrazilMarcos José Burle Aguiar
Department of Pediatrics, Faculty of Medicine, Federal University of Minas Gerais, Belo Horizonte, Brazil
Community Genet 7:117-20. 2004..There are 11 medical schools where basic genetics, but not clinical genetics, is taught. Genetic services in the state include: newborn screening for hypothyroidism, phenylketonuria, sickle cell disease and cystic ..
- Civilian and military genetics: nondiscrimination policy in a post-GINA worldSusannah Baruch
The Genetics and Public Policy Center, 1717 Massachusetts Avenue, NW, Suite 530, Washington, DC 20036, USA
Am J Hum Genet 83:435-44. 2008..Although critical issues remain, such as the potential for genetic information to be used to deny people other forms of insurance, and how the military will use genetic medicine overall, significant progress has been made...
- Health economics and genetic service development: a familial cancer genetic exampleDavid Cohen
University of Glamorgan, School of Care Sciences, Pontypridd, UK
Fam Cancer 3:61-7. 2004..An explanation is given here of the costing methodology as an illustration of what is involved in such an exercise...
- Familial cancer 2003 - research and practice, Couran Cove, Queensland, Australia, 3-6 September 2003Geoffrey J Lindeman
Familial Cancer Centre, Royal Melbourne Hospital, Australia
Fam Cancer 3:75-7. 2004
- Towards quality assurance and harmonization of genetic testing services in the European UnionDolores Ibarreta
European Commission, Joint Research Center, Institute for Prospective Technological Studies, Edificio Expo, E 41092 Seville, Spain
Nat Biotechnol 22:1230-5. 2004
- Community genetic services in Latin America and regional network of medical genetics. Recommendations of a World Health Organization consultationSusana Kofman-Alfaro
Department of Genetics, General Hospital of Mexico, Faculty of Medicine, Universidad Nacional Autonoma de Mexico, Mexico City, Mexico
Community Genet 7:157-9. 2004The World Health Organization sponsored a Consultation on Community Genetic Services and a Regional Network of Medical Genetics in Latin America in Porto Alegre, Brazil, on June 19, 2003...
- A micro costing of NHS cancer genetic servicesG L Griffith
Centre for the Economics of Health, Institute of Medical and Social Care Research, Wheldon Building, University of Wales, Bangor LL57 2UW, UK
Br J Cancer 92:60-71. 2005..The most expensive element of cancer genetic services was labour...
- [A census of medical genetics services in Argentina]Rosa Liascovich
Centro Nacional de Genetica Medica, Administracion Nacional de Laboratorios e Institutos de Salud, Ministerio de Salud y Ambiente de la Nación, Buenos Aires, Argentina
Rev Panam Salud Publica 19:104-11. 2006..To describe the medical genetics services in Argentina, in order to help organize a network to coordinate those services, decrease inequity in access to them, and promote the comprehensive development of medical genetics in the country...
- Cultural enhancement of a clinical service to meet the needs of indigenous people; genetic service development in response to issues for New Zealand MaoriR V Port
Northern Regional Genetic Service, Auckland District Health Board, Auckland, New Zealand
Clin Genet 73:132-8. 2008..We report on the processes undertaken in an attempt to provide a culturally sensitive service for the Maori people of Aotearoa, New Zealand...
- Ethical and legal issues in nutritional genomicsPhilip R Reilly
Interleukin Genetics Inc, Waltham, MA 02452, USA
J Am Diet Assoc 108:36-40. 2008..Relevant legal topics, such as federal and state legislation and judicial decisions, are discussed...
- Ethical and legal aspects of cancer genetic testingKenneth Offit
Clinical Genetics Service, Memorial Sloan Kettering Cancer Center, New York, NY 10021, USA
Semin Oncol 34:435-43. 2007..An approach to these and other ethical challenges will be presented, drawing not only on recent case law but also on a broader bioethical framework...
- Variability and inequity in testing of somatic tissue for hereditary cancer: a survey of UK clinical practiceC L Gaff
Cardiff University Department of Medical Genetics, Institute of Medical Genetics, Cardiff, UK
Clin Genet 70:312-9. 2006..The implications of these variations are considered, and recommendations for the development of a consistent service for testing of somatic tissue offered...
- Practical aspects of delivering hereditary cancer risk counselingTiffani A Demarco
Jess and Mildred Fisher Center for Familial Cancer Research, Georgetown University, Lombardi Comprehensive Cancer Center, Washington, DC 20007, USA
Semin Oncol 34:369-78. 2007....
- Competences, education and support for new roles in cancer genetics services: outcomes from the cancer genetics pilot projectsCatherine Bennett
NHS National Genetics Education and Development Centre, Morris House, c o Birmingham Women s Hospital, Edgbaston, Birmingham, B15 2TG, UK
Fam Cancer 6:171-80. 2007..This represents a current resource gap that will be of concern to cancer networks and a challenge to providers of educational resources and regional genetics services...
- Improving access to cancer genetics services in primary care: socio-economic data from North KirkleesJ Srinivasa
Department of Clinical Genetics, Ashley Wing, Yorkshire Regional Genetics Service, St James s University Hospital, Beckett Street, Leeds, LS9 7TF, UK
Fam Cancer 6:197-203. 2007..Local clinics and increasing awareness of cancer genetics services for professionals and the public can improve access to such services...
- Democratising access to genetic servicesBryn Williams-Jones
Cardiff Institute of Society, Health and Ethics, Cardiff University, 53 Park Place, Cardiff, Wales, United Kingdom
Fam Cancer 5:117-21. 2006....
- Newborn blood spot screening and genetic services: a survey of Minnesota primary care physiciansDiane B Thompson
Graduate Program in Genetic Counseling, University of Minnesota, Minneapolis, Minnesota, USA
Genet Med 7:564-70. 2005..information from the Minnesota Department of Health; (2) determine primary care physicians' perceptions of the benefits of genetic services; and (3) determine primary care physicians' satisfaction with genetic counseling services.
- Genetic risk estimation by healthcare professionalsBenno Bonke
Department of Medical Psychology and Psychotherapy, Erasmus MC, Rotterdam, The Netherlands
Med J Aust 182:116-8. 2005..To assess whether healthcare professionals correctly incorporate the relevance of a favourable test outcome in a close relative when determining the level of risk for individuals at risk for Huntington's disease...
- A framework for genetic service provision for haemophilia and other inherited bleeding disordersC A Ludlam
Department of Haematology, Royal Infirmary, Edinburgh, UK
Haemophilia 11:145-63. 2005..doctors, nurses, laboratory scientists, funders and hospitals on the provision of clinical and laboratory genetic services for haemophilia...
- Tunisia: communities and community geneticsHabiba Chaabouni-Bouhamed
Department of Hereditary Disorders, Charles Nicolle Hospital, Human Genetics Laboratory, Medical School of Tunis, Tunis, Tunisia
Community Genet 11:313-23. 2008..quality of health care services provided in Tunisia and the progress made in genetic research in the country, genetic services still remain insufficient and do not cover all parts of the country...
- Statement on guidance for genetic counseling in advanced paternal ageHelga V Toriello
Genetics Services, Spectrum Health, Grand Rapids, Michigan 49503 2528, USA
Genet Med 10:457-60. 2008..The current document updates the state of knowledge of advanced paternal age effects on single gene mutations, chromosome anomalies, and complex traits...
- Pharmacogenetic testing: not as simple as it seemsSusanne B Haga
Institute for Genome Sciences and Policy, Duke University, Durham, North Carolina27708, USA
Genet Med 10:391-5. 2008..These issues have implications for informed consent and genetic counseling requirements, and for the role of health professionals...
- Genomic medicine and thrombotic risk: who, when, how and why?Chiara Federici
Laboratory of Cellular Biology and Genetics, CNR Institute of Clinical Physiology, G Pasquinucci Hospital, Massa, Italy
Int J Cardiol 106:3-9. 2006....
- Preferences of cardiologists and clinical geneticists for the future organization of genetic care in hypertrophic cardiomyopathy: a surveyI M Van Langen
Department of Clinical Genetics, Academic Medical Centre, Amsterdam, The Netherlands
Clin Genet 68:360-8. 2005..Consequently, capacity problems in both groups are to be expected. To safeguard current professional standards in genetic counselling and testing, deployment of non-medical personnel might be essential...
- Research and practice opportunities at the intersection of health education, health behavior, and genomicsCatharine Wang
Department of Health Behavior and Health Education, and Michigan Center for Genomics and Public Health School of Public Health, University of Michigan, Ann Arbor, USA
Health Educ Behav 32:686-701. 2005..this article by briefly summarizing the existing evidence in the literature pertaining to the public's use of genetic services, the effectiveness of genetic counseling, and the impact of genetic testing...
- Genetic research and genetic information: a health information professional's perspective on the benefits and risksRowena Cullen
Victoria University of Wellington, Wellington, New Zealand
Health Info Libr J 23:275-82. 2006....
- DNA-sequence patenting: National Society of Genetic Counselors (NSGC) position paperNathalie McIntosh
Brandeis University, Genetic Counseling Program, MS008, 415 South Street, Waltham, Massachusetts 02454, USA
J Genet Couns 11:241-3. 2002In November 2000, the Genetic Services Committee of the National Society of Genetic Counselors (NSGC) convened a working group to draft a position paper on patenting DNA-sequences...
- [Genetic counseling and genetic services]Karen Brøndum-Nielsen
John F Kennedy Instituttet, Gl Landevej 7, DK 2600 Glostrup
Ugeskr Laeger 165:777-9. 2003..the genetic basis of disease have lead to an increasing demand for and expectation of genetic counselling and genetic services. This presents a new challenge to the health care system, as well as a need for professional education and ..
- Elements of a genetics counseling serviceNoelle Agan
St John s Mercy Medical Center, Department of Obstetrics Gynecology, St Louis, Missouri 63141, USA
Obstet Gynecol Clin North Am 29:255-63, v. 2002..A team approach is required in order to provide patients comprehensive genetic counseling services...
- Commercialisation of genetic services: the role of genetic counsellorsC MacDonald
Department of Bioethics, Dalhousie University, 5849 University Ave, Halifax, NS, B3H 4H7, Canada
Hum Reprod Genet Ethics 8:1-3. 2002
- Regulation of genetic testing in clinical practiceUlf Kristoffersson
Department of Clinical Genetics, University Hospital, Lund, Sweden
Methods Mol Med 92:369-75. 2004
- Refusal of employment or insuranceJ C Fletcher
Am J Hum Genet 61:A56. 1997
- In focus. Has patient autonomy gone to far? Geneticists' views in 36 nationsDorothy C Wertz
University of Massachusetts, Shriver Division, USA
Am J Bioeth 2:W21. 2002..S. and was least evident in China and India. In general, responses to these cases illustrate a shift away from population or eugenic concerns to a model of genetics focused on the individual...
- Commentary: considering family covenantsPeter T Rowley
Division of Genetics, University of Rochester Medical Center, Rochester, NY 14642, USA
Genet Test 7:323. 2003
- An ethical assessment framework for addressing global genetic issues in clinical practiceJudith M Cassells
Oncol Nurs Forum 30:383-90. 2003....
- I see a long life and a healthy oneGail Vines
New Sci 176:42-5. 2002
- Providing information at the point of care: educational diagnostic reports from a genetic testing service providerLisa M Goos
York University, Toronto, Ontario, Canada
Clin Leadersh Manag Rev 18:11-24. 2004..Overall, physicians confirmed the utility of the program as an educational tool for themselves, and for other non-patient educational activities in which they are involved...
- Population-based newborn screening for genetic disorders when multiple mutation DNA testing is incorporated: a cystic fibrosis newborn screening model demonstrating increased sensitivity but more carrier detectionsAnne Marie Comeau
New England Newborn Screening Program of University of Massachusetts Medical School, Boston, Massachusetts 02130, USA
Pediatrics 113:1573-81. 2004..The objective of this study was to evaluate technical feasibility and practical implications of 2-tiered CF newborn screening that uses testing for multiple mutations (multiple-CFTR-mutation testing)...
- MATCH: a maternal and child health information networkL J Platt
Public Health Service Region IX, San Francisco, CA 94102
Public Health Rep 103:147-53. 1988..was the development of a system to manage data related to prenatal, child health, family planning, and genetic services that are delivered with State support in clinics in the State of Ohio...
- Does this patient have a family history of cancer? An evidence-based analysis of the accuracy of family cancer historyHarvey J Murff
Division of General Internal Medicine, Vanderbilt University Medical Center, and Department of Veterans Affairs, Tennessee Valley Healthcare System, Research Education and Clinical Center, Nashville, Tenn 37212 2637, USA
JAMA 292:1480-9. 2004A family history of certain cancers is associated with an increased risk of developing cancer. Both cancer screening and genetic services referral decisions are often based on self-reported pedigree information.
- Sickle cell screening policies as portent: how will the human genome project affect public sector genetic services?D D Phoenix
Department of Health Sciences, College of Nursing, Clemson University, South Carolina, USA
J Natl Med Assoc 87:807-12. 1995..and development of a national consensus on the appropriate content and just delivery of public sector genetic services is vital; otherwise, the impact of Human Genome Project-derived technology may result in misadventures that ..
- Methodology of a multistate study of congenital hearing loss: preliminary data from Utah newborn screeningKarin M Dent
Department of Pediatrics, University of Utah, Salt Lake City, 84132, USA
Am J Med Genet C Semin Med Genet 125:28-34. 2004..and two common mitochondrial mutations in these populations, and 3) establish a model infrastructure linking genetic services to statewide EHDI programs. As of April 2003, Utah is the only center evaluating patients...
- Genetic counseling gone awry: miscommunication between prenatal genetic service providers and Mexican-origin clientsC H Browner
Center for Culture and Health, Department of Psychiatry and Biobehavioral Sciences, University of California Los Angeles, CA, USA
Soc Sci Med 56:1933-46. 2003..Clients were once a self-selected group of women well-informed about the genetic services being offered...
- The influence of acculturation and breast cancer-specific distress on perceived barriers to genetic testing for breast cancer among women of African descentKatarina M Sussner
Department of Oncological Sciences, Mount Sinai School of Medicine, New York, NY 10029, USA
Psychooncology 18:945-55. 2009Rising health disparities are increasingly evident in relation to use of genetic services (including genetic counseling and testing) for breast cancer risk, with women of African descent less likely to use genetic services compared with ..
- "What is this genetics, anyway?" Understandings of genetics, illness causality and inheritance among British Pakistani users of genetic servicesAlison Shaw
Ethox Centre, Department of Public Health and Primary Care, University of Oxford, Badenoch Building, Old Road Campus, Headington, Oxford OX3 7LG, England
J Genet Couns 17:373-83. 2008..Genetic counselors may need to identify, work with and at times challenge patients' understandings of illness causality and inheritance...
- Economic evaluation of the familial cancer programme in Western Australia: predictive genetic testing for familial adenomatous polyposis and hereditary non-polyposis colorectal carcinomaN Breheny
Department of Health, Government of Western Australia, Perth, Australia
Community Genet 9:98-106. 2006To evaluate costs and outcomes of genetic testing for familial colorectal cancer through services provided by Genetic Services of Western Australia (GSWA).
- Risk perception after genetic counseling in patients with increased risk of cancerJohanna Rantala
Department of Clinical Genetics, Karolinska University Hospital, L5 03, S 17176 Stockholm, Sweden
Hered Cancer Clin Pract 7:15. 2009..Welkenhuysen M-, Hagoel L., Decruyenaere M., Hopwood P. (2003) Risk communication strategies: state of the art and effectiveness in the context of cancer genetic services. Eur J of Human Genetics 11, 725736.
- National and ethnic mutation databases: recording populations' genographyGeorge P Patrinos
Erasmus University Medical Center, Faculty of Medicine and Health Sciences, MGC Department of Cell Biology and Genetics, Rotterdam, The Netherlands
Hum Mutat 27:879-87. 2006..resources not only enhance awareness of the various genetic disorders but also facilitate the provision of genetic services and provide useful insights into the genographic history of human populations...
- Pharmacogenetic testing of CYP2C9 and VKORC1 alleles for warfarinDavid A Flockhart
Indiana University School of Medicine, Indianapolis, Indiana, USA
Genet Med 10:139-50. 2008..resource for medical geneticists and other health care professionals to help them provide quality medical genetic services. Adherence to these standards and guidelines does not necessarily ensure a successful medical outcome...
- Genetic counseling and clinical cancer genetics servicesJ E Stopfer
University of Pennsylvania Cancer Center, Philadelphia, Pennsylvania, USA
Semin Surg Oncol 18:347-57. 2000Cancer genetic services, typically provided by clinicians with expertise in both oncology and genetics, include cancer risk assessment and education, facilitation of genetic testing, pre-and post-test counseling, provision of personally ..
- Genetic counselor opinions of, and experiences with telephone communication of BRCA1/2 test resultsA R Bradbury
Department of Clinical Genetics, Fox Chase Cancer Center, Philadelphia, PA 19111 2497, USA
Clin Genet 79:125-31. 2011..Given increasing demand for, and access to, genetic testing, interest in telephone and Internet genetic services, including disclosure of test results, has increased...
- Cystic fibrosisL P Shulman
Departments of Obstetrics and Gynecology and Molecular Genetics, University of Illinois at Chicago, Chicago, Illinois, USA
Clin Perinatol 28:383-93. 2001..to result in such a contradictory effect is of a continuing concern to those who provide obstetric and genetic services. In a National Institute of Health-sponsored workshop, Menutti and colleagues recommended that those ..
- Brazil's Craniofacial Project: genetic evaluation and counseling in the Reference Network for Craniofacial TreatmentIsabella Lopes Monlleo
Department of Pediatrics, Fundação Universitária de Ciências da Saúde de Alagoas, Clinical Genetics Sector, Hospital Universitario, Universidade Federal de Alagoas, Alagoas, Brazil
Cleft Palate Craniofac J 43:577-9. 2006..Our main aim was to describe the status of clinical genetics in the Brazilian Reference Network for Craniofacial Treatment...
- Cancer genetics service provision: a comparison of seven European centresP Hopwood
Psycho Oncology, Christie Hospital NHS Trust, Manchester, UK
Community Genet 6:192-205. 2003..Information was obtained on aspects of services both nationally and locally...
- Cancer genetic counseling in public health care hospitals: the experience of three Brazilian servicesEdenir Inez Palmero
Department of Genetics, Federal University of Rio Grande do Sul, Porto Alegre, Brazil
Community Genet 10:110-9. 2007..The present study aims to describe the structure and characteristics of three cancer genetic services in Brazilian public health care hospitals and discuss alternatives for the identification and prevention of ..
- Evaluating genetic counseling: client expectations, psychological adjustment and satisfaction with serviceAngela Davey
Genomics Directorate, Department of Health, Perth, Western Australia, Australia
J Genet Couns 14:197-206. 2005..This study aimed to evaluate the genetic counseling services provided by Genetic Services of Western Australia (GSWA) to determine the impact of counseling on client expectations, satisfaction with ..
- Common autosomal recessive diseases in Oman derived from a hospital-based registryA Rajab
Genetic Unit, Directorate General of Health Affairs, Ministry of Health, Muscat, Sultanate of Oman
Community Genet 8:27-30. 2005..The aim of the present study was to evaluate birth prevalence of commonly diagnosed autosomal recessive diseases and to estimate needs and priorities of genetic services.
- Ecuador: public health genomicsF González-Andrade
Department of Medicine, Metropolitan Hospital, Quito, Ecuador
Public Health Genomics 13:171-80. 2010..Ecuador has a small cadre of genetic professionals that provide clinical genetic services in a few private medical centers in the main cities...
- The Italian AICE-Genetics hemophilia A database: results and correlation with clinical phenotypeMaurizio Margaglione
Cattedra di Genetica Medica, Dipartimento di Scienze Biomediche, Universita degli Studi di Foggia, Viale Pinto, 71100 Foggia, Italy
Haematologica 93:722-8. 2008The high mutational heterogeneity of hemophilia A is a challenge for the provision of genetic services. We plan to identify the mutation in patients with hemophilia A in order to create a confidential national database of mutations for ..
- Comparison of genetic services with and without genetic registers: access and attitudes to genetic counselling services among relatives of genetic clinic patientsL Kerzin-Storrar
Academic Group of Medical Genetics and Regional Genetic Service, Manchester, UK
J Med Genet 39:e85. 2002..of the register relatives and 26% (50/195) of the non-register relatives had had contact with the clinical genetic services, a significant difference (p<0.02)...
- Provision of genetic services for hearing loss: results from a national survey and comparison to insights obtained from previous focus group discussionsKara Anne Withrow
Department of Human and Molecular Genetics, Virginia Commonwealth University, P O Box 980033, Richmond, VA 23298 0033, USA
J Genet Couns 18:618-21. 2009..b>Genetic services for deafness are also being sought more often due to the early identification of hearing loss through newborn ..
- Interactive patient decision aids for women facing genetic testing for familial breast cancer: a systematic web and literature reviewLisa Williams
Department of General Practice, Centre for Health Sciences Research, School of Medicine, Cardiff University, Cardiff, UK
J Eval Clin Pract 14:70-4. 2008..A systematic review to identify and appraise interactive decision aids that are designed for consumer use, in the field of hereditary breast cancer and genetic testing...
- Genetic education for primary care providers: improving attitudes, knowledge, and confidenceJune C Carroll
Family Medicine at Mount Sinai Hospital in Toronto, Ont
Can Fam Physician 55:e92-9. 2009To increase primary care providers' awareness and use of genetic services; increase their knowledge of genetic issues; increase their confidence in core genetic competencies; change their attitudes toward genetic testing for hereditary ..
- Impact of genetic advances and testing for hearing loss: results from a national consumer surveyKara A Withrow
Department of Human and Molecular Genetics, Virginia Commonwealth University, Richmond, VA 23298 0033, USA
Am J Med Genet A 149:1159-68. 2009..It is therefore important to clarify the feelings of these potential consumers towards genetic services for hearing loss and understand their goals for genetic testing...
- Genetic servicesD Donnai
University of Manchester and Regional Genetic Service, Manchester, UK
Clin Genet 61:1-6. 2002..becoming relevant to services for patients, and hence there is an increasing demand for, and expectation of, genetic services. This brings a challenge for health services worldwide to keep pace with the expectations of their ..
- Contending visions in the evolution of genetic medicine: the case of cancer genetic services in Ontario, CanadaFiona Alice Miller
Health Policy, Management and Evaluation, University of Toronto, 155 College Street, 4th Floor, Toronto, Ontario M5T 3M6, Canada
Soc Sci Med 67:152-60. 2008Growth in genetic medicine has provoked debate about how new and emerging genetic services should be provided, and specifically, what roles non-genetic clinicians should assume...
- Unique disease heritage of the Dutch-German Mennonite populationNoelle C Orton
Department of Medical Genetics, Faculty of Medicine, Institute of Maternal and Child Health, University of Calgary, Calgary, Alberta, Canada
Am J Med Genet A 146:1072-87. 2008..In addition, further research developments should enhance delivery of clinical genetic services to this unique community...
- Genetic support groups: a continuum of genetic servicesJ O Weiss
Alliance of Genetic Support Groups, Washington, DC 20037
Women Health 15:37-53. 1989..Networks, such as the Alliance of Genetic Support Groups, can help member organizations become a unified force without taking away their individual agendas...
- Interest and beliefs about BRCA genetic counseling among at-risk Latinas in New York CityKatarina M Sussner
Department of Oncological Sciences, Division of Cancer Prevention and Control, Mount Sinai School of Medicine, One Gustave L Levy Place, 1425 Madison Ave, Box 1130, New York, NY 10029, USA
J Genet Couns 19:255-68. 2010Latinas are less likely to use genetic services (counseling and testing) for hereditary breast and/or ovarian cancer risk compared to other ethnic groups...
- Increased genetic counseling support improves communication of genetic information in familiesLaura E Forrest
Murdoch Childrens Research Institute, The Royal Children s Hospital, Melbourne, Australia
Genet Med 10:167-72. 2008To determine whether the provision of additional genetic counseling support could improve the uptake of genetic services by "at-risk" relatives of probands.
- A nationwide genetic testing survey in Italy, year 2007Bruno Dallapiccola
IRCCS Casa Sollievo della Sofferenza Hospital, San Giovanni Rotondo, and CSS Mendel Institute, Rome, Italy
Genet Test Mol Biomarkers 14:17-22. 2010..the practices of cytogenetic and molecular genetic testing and genetic counseling activities in Italy in the year 2007 and provide guidance to the national and regional health systems to improve the organization of genetic services.
- Exploring the discourse between genetic counselors and Orthodox Jewish community members related to reproductive genetic technologyIlana Suez Mittman
Department of Epidemiology and Preventive Medicine, University of Maryland at Baltimore, School of Medicine, 807 S Clinton Street, Baltimore, MD 21224 4030, USA
Patient Educ Couns 65:230-6. 2007..care are well documented, little attention has been devoted to understanding religious beliefs pertaining to genetic services. This study evaluated the discourse between genetic counselors and Orthodox Jewish community members' ..
- Hereditary disorders in the Eastern Mediterranean RegionH Hamamy
College of Medicine, Mustansiriya University, Baghdad, Iraq
Bull World Health Organ 72:145-54. 1994..to bear children up to menopause; the general lack of public awareness about genetic diseases; and the dearth of genetic services in the region. These and some other related issues are discussed in detail in this review article.
- Physician knowledge and attitudes towards molecular genetic (DNA) testing of their patientsA Hunter
Department of Genetics, Children s Hospital of Eastern Ontario, Ottawa, Canada
Clin Genet 53:447-55. 1998..Further, to examine differences between four practice specialties and to assess variables that affect both knowledge and attitudes...
- GeneClinics: a hybrid text/data electronic publishing model using XML applied to clinical genetic testingP Tarczy-Hornoch
Department of Pediatrics, University of Washington, Seattle 98195 6320, USA
J Am Med Inform Assoc 7:267-76. 2000..GeneClinics is intended to promote the use of genetic services in medical care and personal decision making by providing health care practitioners and patients with ..
- The educational needs and professional roles of Canadian physicians and nurses regarding genetic testing and adult onset hereditary diseaseJoan L Bottorff
School of Nursing, University of British Columbia, Vancouver, Canada
Community Genet 8:80-7. 2005To investigate the knowledge, professional involvement and confidence of Canadian nurses and physicians in providing genetic services for adult onset hereditary disease.
- Medical genetics in Zulia, a State of VenezuelaSandra González-Ferrer
Unit of Medical Genetics, Faculty of Medicine, Zulia University, Maracaibo, Venezuela
Community Genet 7:153-6. 2004..There are seven public and private groups providing genetic services, the most important of which, the Medical Genetic Unit at the Zulia University was created in 1973...
- Medical genetics in ParaguayMarta Ascurra de Duarte
Instituto de Investigaciones en Ciencias de la Salud, Asuncion, Paraguay
Community Genet 7:146-9. 2004..There are only two clinical geneticists and four biochemists trained in human genetics, and virtually all genetic services in the country are concentrated in the 'Instituto de Investigaciones en Ciencias de la Salud' (IICS) from the ..
- Assessment of the genetic causes of recessive childhood non-syndromic deafness in the UK - implications for genetic testingT Hutchin
Molecular Medicine Unit, St James s University Hospital, University of Leeds, UK
Clin Genet 68:506-12. 2005..This lack of knowledge hampers the development of diagnostic genetic services for deafness...
- Coming full circle: a reciprocal-engagement model of genetic counseling practicePatricia McCarthy Veach
Department of Educational Psychology, 206 Burton Hall, University of Minnesota, 178 Pillsbury Dr, SE, Minneapolis, MN 55455, USA
J Genet Couns 16:713-28. 2007..and utilization of a normative model of practice defined by members of the profession is critical as genetic services become more commonplace in medical care...
- The North Carolina Cleft Outcomes StudyRonald P Strauss; Fiscal Year: 2013..A secondary objective is to assess timeliness of services, including speech and language and genetic services, surgical outcomes, use and costs of team care, out of pocket expenses, and caregiver costs among families of ..
- Communicating Genetic Test Results by Telephone: A Randomized TrialAngela R Bradbury; Fiscal Year: 2013..Telephone delivery of genetic services is one innovative and efficient delivery model that has the potential to expand genetic services to diverse ..
- Prevention of Complications of ThalassemiaPatricia J Giardina; Fiscal Year: 2011..Specifically, the NYPH-WMC aims to provide comprehensive medical, psychosocial and genetic services. A multidisciplinary on-site diagnostic, treatment and support team comprised of the director, a pediatric ..
- Virtual Cancer Genetic Services: Telemedicine Delivery in Community ClinicsAngela R Bradbury; Fiscal Year: 2013..telemedicine communication, delivery, and dissemination strategies to optimize outcomes of telemedicine genetic services, in and beyond cancer genetics...
- Psychosocial Impact of Genetics in EpilepsyRuth Ottman; Fiscal Year: 2013..psychosocial impact of genetic information on individuals with epilepsy and their family members;hence the results should be extremely valuable for planning of genetic services that maximize benefit and minimize harm in this disorder.
- Determinants of Adoption and Delivery of Genomic Medicine in VHAMAREN THERESA SCHEUNER; Fiscal Year: 2013..With genomic medicine expanding beyond its traditional boundaries, questions remain about how genetic services can best be delivered to an increasing number of people...
- Cancer Genetics Education for the Deaf CommunityCHRISTINA GERMAINE PALMER; Fiscal Year: 2013..compare the effect of a bilingual (ASL+English) education intervention on comprehension and attitudes toward genetic services compared to a monolingual format (English text only);and (b) to identify subgroups who may particularly ..
- HUMAN GENOME EDUCATION MODEL (HUGEM) PROJECT IIE Lapham; Fiscal Year: 2001..dramatic advances (largely resulting from the Human Genome Project) which have led to an increased demand for genetic services and brought genetics issues to the forefront of health care...
- GENETICS IN NURSING LITERATURE AND CONTINUING EDUCATIONGWENIEVERE ANDERSON; Fiscal Year: 1999..only to understand its evolution, but also to predict possible future directions for nurses in delivery of genetic services in the community, industry, and tertiary care hospitals...
- MID ATLANTIC CANCER GENETICS NETWORKConstance Griffin; Fiscal Year: 2005..to established clinical programs in predictive cancer genetic testing to further expand cancer genetic services in the region and support the activities of the national CGN...
- CAROLINA AND GEORGIA GENETICS NETWORK CENTERJoellen Schildkraut; Fiscal Year: 2004..We have received substantial institutional support for genetic testing, clinical cancer genetic services and our educational programs...
- Clinical Versus Experiential Views of Genetic DisabilityCAROL GILL; Fiscal Year: 2005..with genetic disabilities (Perspective Informants) regarding issues of life with genetic disability, genetic services, social and professional attitudes toward disability, and determinants of "quality of life...
- CANCER GENETICS EDUCATION FOR HEALTH CARE PROFESSIONALSDEBRA TOPPMEYER; Fiscal Year: 2002..However, many health care providers lack the knowledge base to integrate cancer genetic services into their practice...
- PARTNERSHIP FOR GENETIC SERVICESMARY DAVIDSON; Fiscal Year: 2001..The Partnership for Genetic Services Pilot Program proposes to develop a model project, aimed at increasing the likelihood that persons affected ..
- Summer Program in Genetics for Audiology FacultyKathleen Arnos; Fiscal Year: 2004..future audiologists in the clinical, technical, ethical, social and legal issues surrounding the provision of genetic services and molecular testing for hereditary types of hearing loss...
- COORDINATING CENTER FOR THE CANCER GENETICS NETWORKDianne Finkelstein; Fiscal Year: 2006..2. An Electronic Access to Genetic Services, educational materials, and research protocols and 3. A Coordinating Center for Network Research Protocols...
- ROUTES OF ACCESS TO GENETIC SERVICES FOR RURAL KY WOMENSusan Kelly; Fiscal Year: 2002..abstract) The purpose of the proposed project is to deepen empirical understanding of reproductive genetic services in rural areas, through a comparative case study of genetic counseling, testing, and related services among ..
- SCREENING AND ANALYSIS OF MAMMALIAN MUTATIONAL RISKYU YONGJIA; Fiscal Year: 1992A long term objective of Laboratories for Genetic Services, Inc...
- PUBLIC HEALTH GENETICS--AN EDUCATION MODELCarl Marrs; Fiscal Year: 1999..education will help meet the demand for informed public health professionals who must be knowledgeable about genetic services and the associated legal, social and ethical implications, and who must be able to educate the public about ..
- ACCESS TO THE GENOME--JUSTICE AT THE FRONTIER OF SCIENCEMaxwell Mehlman; Fiscal Year: 1993..as possible to technologies that currently exist, this study will project the degree of access to these genetic services that would result if access were governed by the principles of distributive justice currently embodied in ..
- PREVENTIVE ONCOLOGY AWARDAnita Kinney; Fiscal Year: 2003..The University of Utah is a major academic institution with many distinguished scientists, and offers an excellent environment for Dr. Kinney to develop her skills and gain additional expertise to accomplish her goals. ..
- BRCA1 TESTING IN A LARGE AFRICAN AMERICAN KINDREDAnita Kinney; Fiscal Year: 2003..abstract_text> ..
- SEXUAL HEALTH PRACTICES OF HOMELESS ADOLESCENTSDONNA REW; Fiscal Year: 2005..The expected outcome is an effective, brief intervention for promoting sexual health that can be delivered to homeless adolescents in an unsheltered environment. ..
- Hereditary Breast Cancer: Genetic and Molecular StudiesHoda Anton Culver; Fiscal Year: 2008..abstract_text> ..
- Web-based Family History Screening for Hereditary Breast Cancer RiskLouise Acheson; Fiscal Year: 2008..unreadable] [unreadable] [unreadable] [unreadable]..
- AUSTRALASIAN COLORECTAL CANCER FAMILY REGISTRYJohn Hopper; Fiscal Year: 2007..i ..
- Overcoming Genetic Literacy Barriers Among Underserved MinoritiesCatharine Wang; Fiscal Year: 2008..The ultimate goal of this research is to reduce health disparities and improve health outcomes among underserved minorities through the use of more appropriate tools and delivery approaches. [unreadable] [unreadable] [unreadable]..
- Developing Health Behaviors in Middle AdolescenceDONNA LYNN REW; Fiscal Year: 2010....
- A Longitudinal Study of Health Risk Behavior in YouthDONNA REW; Fiscal Year: 2006..abstract_text> ..
- GENETIC COUNSELING STRATEGIES WITH MEXICAN-ORIGIN WOMENCarole Browner; Fiscal Year: 2002..abstract_text> ..
- NURSING CDROM ON ETHICAL ISSUES OF GENETIC TESTINGJanet Williams; Fiscal Year: 2002..Increased knowledge of ethical aspects of genetic testing will enable professional nurses to incorporate this knowledge into their professional nursing roles. ..
- Use of Genetics in Neurologists' Clinical PracticesCarole Browner; Fiscal Year: 2006..abstract_text> ..
- Enhanced Single-Visit Cervical Cancer Screening ProgramHoda Anton Culver; Fiscal Year: 2007..The incremental net cost associated with an incremental improvement in outcomes in terms of quality-adjusted life years (QALYs) will be measured. [unreadable] [unreadable]..
- UCI UCSD CANCER GENETICS NETWORKHoda Anton Culver; Fiscal Year: 2006..The majority of the elements of the proposed network have already been established by our group and communications among them are in place. ..
- National Black Leadership Conference on GeneticsKathy Hudson; Fiscal Year: 2004..The Conference will be held in Washington DC in May 2004. ..
- CARCR Confrence SupportHoda Anton Culver; Fiscal Year: 2005..The March 2005 conference, which is the first to be covered by this proposal, will be held at a still to be determined site in Northern California. ..
- BioMediator: Biologic Data Integration& Analysis SystemPeter Tarczy Hornoch; Fiscal Year: 2005..abstract_text> ..
- EVALUATING USE OF GENETIC INFORMATION: A MODEL PROCESSWylie Burke; Fiscal Year: 2003..5. To conduct an evaluation of the model process within a large health care system. ..
- ROBUST LINKAGE METHODS FOR HUMAN PEDIGREE DATAKatrina Goddard; Fiscal Year: 2004..At the end of the project period, a comprehensive set of tools for model-free affected relative pair analysis will be available. ..
- Familial Dilated Cardiomyopathy:Genetic CharacterizationMatthew Taylor; Fiscal Year: 2006..In addition, a diverse collection of consultants has been assembled to provide ongoing expertise that is sensitive to the needs of both the research and career development plans of the candidate. ..
- Family Health After Predictive HD TestingJanet Williams; Fiscal Year: 2004..This study will document the health care needs of family members of persons who receive a positive result from presymptomatic gene testing for an inherited degenerative neurologic disease. ..
- NCI CFRBCCS INFORMATICS CENTER AT UCIHoda Anton Culver; Fiscal Year: 2005....
- The molecular basis for an animal model of inherited hyperuricosuriaDanika Bannasch; Fiscal Year: 2007..The elucidation of a novel gene function should provide new avenues of investigation for the treatment of the human condition. [unreadable] [unreadable] [unreadable]..
- Role of Family History in CAD Risk AssessmentMaren Scheuner; Fiscal Year: 2007..In addition, the incremental value of comprehensive familial risk assessment in decision-making regarding lipid-lowering treatment with diet or drugs for primary prevention of CAD will be analyzed. [unreadable] [unreadable] [unreadable]..
- NCI CANCER GENETICS NETWORK INFORMATICS CENTER AT UCIHoda Anton Culver; Fiscal Year: 2006..The design of the Cancer Genetics Network CIMS architecture is a very cost-effective solution without compromising performance and scalability and prepares for the challenges of the next millennium. ..
- Exploring Attitudes About Data Disclosure and Data-Sharing in Genomics ResearchSusanne Haga; Fiscal Year: 2008..The success of large-scale genomics research initiatives will depend on the support and participation of the public and therefore, their views are critically important to obtain. [unreadable] [unreadable] [unreadable]..