Screening is most commonly requested through a doctor’s office, usually an Ob/Gyn. Screening is also offered at many hospital-based medical genetics programs (where genetic counseling is available) and through several community screening programs and a program where a saliva sample is collected at home. You can also contact a genetic counselor directly, especially if you know you're a carrier or you have a family history of genetic disease. Page down for more information, links and listings.
Screening through Your Doctor’s Office
Most physicians are able to draw blood for genetic disease tests in their office and send it to a laboratory for analysis. The best place to start for most people who wish to get tested is their regular doctor, most often the woman’s Ob/Gyn. Some physicians have genetic counselors in their practices; others will have genetic counselors or genetics programs to which they will refer patients. Visit the section Talking to Your Doctor for recommendations about what to say at your appointment.
Jscreen may also be a screening option to consider for those with limited access to a doctor or concern for cost. Their ReproGEN test is designed for prospective parents of any ethnic background. It’s based on an at-home saliva test, which is returned to a lab for analysis. Genetic counseling is included. Testing is coordinated with your doctor. There is generally a three-week turnaround time. (The test is currently $149 if you have insurance, $299 for self-pay.)
You can look for a genetic counselor in your area through the website of the National Association of Genetic Counselors.
Know Before You Go
Tell your doctor: Whether you are considering starting or adding to your family, it is important to tell your doctor or genetic counselor about your family's ethnic and geographic background and discuss any genetic conditions that run in your family. If you have ever been screened in the past, bring your report with you to your appointment.
Insurance coverage: Many insurance plans cover testing for genetic diseases, whether done through a commercial lab, at a hospital, clinic or via an online service. Patients who do not have coverage for testing may be eligible for a reduced-price test. The Canavan Foundation can refer you to reduced price options if necessary. Contact us.
If you are of Sephardic/Mizrahi heritage: As Jews of Ashkenazi background make up the predominance of the U.S. Jewish population, doctors and genetics programs may be more familiar with the Ashkenazi Jewish genetic diseases than the Sephardic/Mizrahi Jewish genetic diseases. If you are of Sephardic/Mizrahi background, you may want to look for a program which specializes in these diseases. Call the program in your area and ask if they are familiar with Sephardic/Mizrahi genetic diseases. Cedars/Sinai in LA, the Sarnoff Center for Jewish Genetics (Chicago) and Cohen Children's Hospital/Northwell Health on Long Island, all located in areas with a significant Sephardic/Mizrahi population, have experience in Sephardic/Mizrahi genetic screening.
Screening at a Hospital or Clinic
Hospital-Based Medical Genetics Programs: Many hospitals around the country, especially in larger metropolitan areas, have medical genetics departments that offer genetic testing and counseling. A person who has a known family history of genetic diseases, has had a positive test result in the past, is already pregnant or has had a child with an inherited genetic disease may wish to go directly to one of these hospital programs. See state-by-state listing below.
Community Screening Programs: We have identified five community screening programs that usually offer screening at a subsidized price. These programs may have eligibility limitations and may not screen for all diseases. Center for Jewish Genetics (Chicago), Jewish Genetic Disease Center of Greater Phoenix, Victor Center (Miami, Philadelphia), Dor Yeshorim (Brooklyn). Scroll down for listings.
CA, CT, FL, GA, IL, MA, MI, MN, NJ, NY, OH, OR, PA, TX, VA
Disclaimer: The Canavan Foundation does not endorse any of these programs. This list is offered for information purposes only. Please contact us if you have any information which will allow us to correct or add to this list.
757 Westwood Plaza
Los Angeles, CA 90095
Medical Genetics
444 South San Vicente Bvld., Suite 1001
Los Angeles, CA 90048
310.423.9990
Familiarity with Sephardic-Mizrahi genetic diseases
UCSF Benioff Children's Hospital
Ron Conway Family Gateway Medical Building
1825 Fourth St., Sixth Floor
101 The City Drive South, 2ZOT4482
Orange, CA 92868-3298
714.456.5791
UC San Francisco Medical Center
533 Parnassus, U-262
San Francisco, CA 94143
415.476.4808
Medical Genetics H-315
Department of Pediatrics
Stanford University School of Medicine
Stanford, CA 94305
650.723.5198
5 Perryridge Road
Greenwich, CT 06830
203.863.3917
Victor Center (Community Screening Program)
3100 SW 62nd Avenue Miami, FL 33155
(786) 624-2671
Save Babies Through Screening Foundation, Inc.
PO Box 5037
Douglasville, GA 30154
888.454.3383
Norton and Elaine Sarnoff Center for Jewish Genetics (Community Screening Program)
Ben Gurion Way
30 South Wells Street
Chicago, IL 60606
312.357.4718
Can do Sephardic/Mizrahi testing on a case-by-case basis
Lurie Children's Hospital of Chicago
Division of Genetics, Birth Defects and Metabolism
2300 Children’s Plaza No. 59
Chicago, IL 60614-3394
773.880.4462
Boston University School of Medicine
Center for Human Genetics
700 Albany Street, Ste. W408
Boston, MA 02118
Tufts Medical Center Floating Hospital for Children
Division of Genetics
800 Washington St., 3rd Floor
Boston, MA 02111
617.636.7721 Victor Program questions
617.636.8100 Appointments
Department of Medical Genetics
2799 West Grand Blvd., CFP-4
Detroit, MI 48202
313.916.3188
200 First Street SW
Rochester, MN 55905
507.284.8198 Clinical Genetics
800.533.1710 Genetics Laboratory
Hackensack University Medical Center
Genetics & Genetics Counseling Program
30 Prospect Avenue
Hackensack, NJ 07601
201.996.5264
Rutgers New Jersey Medical School
Institute of Genomic Medicine
185 South Orange Avenue
Medical Science Bldg., F-656
Newark, NJ 07103
973.972.3170
St. Joseph’s Regional Medical Center
703 Main Street
Patterson, NJ 07503
973.754.2727
Montefiore Medical Center/Albert Einstein College of Medicine
Reproductive Genetics Division
1695 Eastchester Road, Suite 301
Bronx, NY 10461
718.405.8150
New York Presbyterian/Brooklyn Methodist Hospital
Genetic Testing and Counseling Program
506 6th St.
Brooklyn, NY 11213
718.780.556
Ashkenazi Jewish Genetic Diseases
Dor Yeshorim (Community Screening Program)
429 Wythe Avenue
Brooklyn, NY 1211
718.384.2332
Division of Genetics
140 Hodge Avenue, Room 166
Buffalo, NY 14222-2034
716.878.7530
Cohen Children's/Northwell Health
225 Community Drive
Great Neck, NY 11020
516.918.4800
Familiarity with Sephardic/Askenazi diseases
Reproductive Genetics Counseling Program
1428 Madison Avenue (at 99th Street)
The Atran Building, 1st Floor
New York, NY 10029
Human Genetics Program
MSB 136
550 First Avenue
New York, NY 10016
212.263.7621
Division of Medical Genetics
350 East 17th Street, Suite 6BH10
New York, NY 10003
212.420.4179
Columbia University Medical Center
Division of Medical Genetics
3959 Broadway
CHN 6-601A
New York, NY 10032
212.305.6731
Pediatric Medical Genetics
505 East 70th St.
Helmsley Tower, 3rd Floor
New York, NY 10021
646.962.2205
Cincinnati Children’s Hospital Medical Center
Division of Human Genetics
3333 Burnet Avenue
Cincinatti, OH 45229-3026
800.344.CHMC x64760
Oregon Health Sciences University
Biochemical Genetics Laboratory
Portland, OR 97201
503.494.2400
Victor Center (Community Screening Program)
5501 Old York Road
Levy 2 West
Philadelphia, PA 19141
Genetics & IVF Institute – Molecular Genetics Laboratory
Fairfax, VA 22031
800.654.4363