The Carver Lab of the Institute for Vision Research at University of Iowa will not bill insurance companies directly. They are a nonprofit lab, and one of the ways that they keep their costs low is by avoiding the billing issues inherent in dealing with insurance. Patients who pursue genetic testing through this program must provide payment with a check or credit card, and then submit an invoice to their insurance company with a request for reimbursement.

Insurers sometimes pay for genetic testing. Since most insurance companies do not have a stated policy about genetic testing, though, each case is reviewed on an individual basis. Insurers are more likely to pay for genetic testing if the ordering physician or genetic counselor submits documentation of medical necessity. This form can be used to assist you in trying to obtain insurance reimbursement for your testing.

The American Academy of Ophthalmology recommends genetic testing and genetic counseling for ALL patients with inherited retinal disease. Genetic counseling for inherited retinal diseases can be obtained in person at a retinal dystrophy clinical center or genetics clinic, or by phone via InformedDNA. In all cases, the cost of genetic counseling may or may not be covered by insurance, and will be a separate charge from genetic testing.

Genetic Counseling Resources:

• Retinal Dystrophy Clinical Centers supported by the Foundation Fighting Blindness (listed under FFB Research Center Awards). All have genetic counselors and/or physicians who provide ocular genetic counseling.
• In addition to these clinical research centers, the Foundation Fighting Blindness maintains a list of retina specialists interested in caring for patients with inherited retinal diseases.
• The National Society of Genetic Counselors is a searchable website for in-person genetic counselors. Note that most genetic counselors working in a medical center genetics clinic do not specialize in inherited retinal diseases, but can help to order and interpret genetic testing for Usher syndrome.
• InformedDNA: Telephone-based genetic counseling appointments by a Genetic Counselor who specializes in inherited retinal diseases, including Usher syndrome.
  

Yes, of course. We're partnering with Carver Lab for this initiative, but you're welcome to get tested anywhere. The important thing is to add your results to the USH Trust Registry. The USH Trust is currently available in English, Spanish, Hebrew, Dutch and German.

Labs performing Usher syndrome genetic testing in the United States:
Partners Healthcare, Harvard Medical Center
GeneDx
Prevention Genetics
Baylor Genetics Labs
Casey Eye Institute Molecular Diagnostics

Genetic testing for Usher syndrome is also available through some labs outside of the United States.

Most genetic tests are performed on a DNA sample. Because every tissue in the body is made of cells that contain DNA, any tissue can be used as a source of DNA. However, a blood test is the most common source because it can easily be obtained in large quantities; typically 5-10 ml (1-2 teaspoons) are taken for a test. Some laboratories will allow cheek cells to be submitted for genetic testing. In this case, the cells are usually collected by rubbing the inside of the mouth with a small brush.

After the DNA is obtained from a blood or other tissue sample, a variety of different methods can be used to look for mutations in your genes. Sometimes the whole coding sequence of the gene is examined. This is similar to reading a page in a book to look for spelling errors in all of the words. Other times, methods are used that only look for the most common mutations. In this case, the test is similar to looking at a page only for a specific misspelled word and ignoring all of the other words. Some laboratories may combine these methods by first screening for common mutations and then, in certain circumstances, examining the whole coding sequence of the gene. Different laboratories may test for a different number of Usher genes.

Yes, the Carver Lab accepts samples from outside the United States. Simply follow these instructions to participate.