Genetics Services Plan Footnotes
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Note 1:
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"Traditional" genetic disorders refers to conditions that are rare and primarily affect children (e.g. cystic fibrosis, Down syndrome, sickle cell anemia).
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Note 2:
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Genetic service consumers include those who need or may need genetic services and those who benefit or may benefit from genetic education activities.
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Note 3:
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Adapted from National Society of Genetic Counselors website, www.nsgc.org.
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Note 4:
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Aronson RA, Maternal and Child Health Education and Training Institute Summit Conference: Conference Report; May 31, 1995.
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Note 5:
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Bernhardt BA, Pyeritz RE: The economics of clinical genetics services. III. Cognitive genetics services are not self-supporting. Am J Hum Genet 44:288-293, 1989.
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Note 6:
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These include 8 in the Milwaukee area, 5 in Madison, 2 in Marshfield, 1 in La Crosse, and 1 in Green Bay.
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Note 7:
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Currently these include 6 in Milwaukee, 18 in Madison, 3 in La Crosse and 2 in Green Bay.
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Note 8:
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One approach to defining levels of care is as follows:
- University affiliated comprehensive programs. Two such programs exist in Wisconsin, at the University of Wisconsin-Madison and through the Medical College of Wisconsin and Children's Hospital of Wisconsin in Milwaukee. Such programs not only provide general genetic services, but also a variety of subspecialty clinical activities (e.g. skeletal dysplasias, neurofibromatosis, sensory deficits, sickle cell disease etc.). In addition, these units are central in continuing medical education and training of professionals in genetics.
- Programs with a physician geneticist on site, providing regionally based general, and in some cases subspecialty, genetic services. Examples include the La Crosse Regional Genetics Program, and the Marshfield Clinic Genetics Program.
- Self-contained health care system based programs with a physician geneticist on site. It is likely that this model will develop in this state in the future.
- Programs with genetic counselor(s) on site that work with physician geneticists who are based elsewhere (either from level 1 or 2 programs or private providers). Examples are the programs in Green Bay and Neenah.
- Outreach sites with or without a site-based coordinator, but without permanent, community-based genetic physicians or genetic counselors. Such outreach activities are provided in Eau Claire, Ashland, Rhinelander and Racine.
- Private Providers - Various services are offered by other, private clinical geneticists and by privately employed genetic counselors. Most of these services are located in Milwaukee and the surrounding suburbs.
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Note 9:
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David Witt, MD; presented at The Third National Conference on Genetics and Public Health, September 20, 2000.
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Note 10:
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Current sources of funding for genetic services in the public sector are summarized in Appendix IV.
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Note 11:
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1998 Family Health Survey, Wisconsin Bureau of Health Information.
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Note 12:
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Hunter A, Wright P, Cappelli M, Kasaboski A, Surh L: Physician knowledge and attitudes towards molecular genetic (DNA) testing of their patients. Clin Genet 53:447-455, 1998; Watson EK, Shickle D, Qureshi N, Emery J, Austoker: The 'new genetics' and primary care: GPs' views on their role and their educational needs. Fam Pract 16:420-425, 1999; Emery J, Watson E, Rose P, Andermann A: A systematic review of the literature exploring the role of primary care in genetic services. Fam Pract 16:426-445, 1999.
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Note 13:
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Hall JG, Powers EK, McIlvaine RT, Ean VH: The frequency and financial burden of genetic disease in a pediatric hospital. Am J Med Genet 1:17-36, 1978; Cassidy SB, Brunger JW, Moussavand S, McCandless SE: Now more than ever: The burden of genetic disease in over 4,000 consecutive pediatric hospital admissions. American Society of Human Genetics National Convention, Philadelphia, 2000.
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Note 14:
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Lubs ML: Cost-benefit analysis in genetic disorders. Am J Med Genet 6:331-332, 1980.
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Note 15:
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A list of proposed "primary players" for each cluster of recommendations is presented in Appendix VI.
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Note 16:
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Core Competency Working Group of the National Coalition for Health Professional Education in Genetics: Recommendation of core competencies in genetics essential for all health professionals. Genetics in Medicine 3:155-159, 2001.
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