Blind World Magazine

FFB Offers Free Information Packet to Help with Genetic Testing Process.

December 20, 2005.
By Ben A. Shaberman,
The Foundation Fighting Blindness (FFB).

For people with retinal degenerative diseases and their family members, genetic testing can reveal valuable information about the disease, including: the likelihood of passing it on to children, the potential severity of long-term vision loss, eligibility for forthcoming clinical trials, and the benefits of emerging treatments. Genetic testing can help people make informed decisions about their future, especially in the areas of family and career planning. When handled with appropriate counseling and education, the identification of disease-causing genes can empower patients to deal more effectively with often-formidable retinal conditions.

Though genetic testing is becoming more widely available everyday, it is still a process that requires a fair amount of education and effort for both the patient and physician. The Foundation has developed a genetic testing information packet to help patients and physicians better understand and navigate the process.

The packet includes:

General information about genetics and inheritance of diseases

Decision tree to help the physician and patient make decisions about testing and treatment options

Discussion of the role of a genetic counselor

Sample forms and procedures for submitting a blood sample for testing

Though genetic testing can be beneficial to people and families with inherited diseases, the decision to get a genetic test should be made on an individual basis under the guidance of a genetic counselor who can help patients understand the results and their implications. Genetic testing may not be appropriate for everyone.

The Foundation Fighting Blindness does not provide genetic counseling nor are we qualified to help people make decisions about genetic testing. The information provided by FFB is an educational resource only.

2005 Foundation Fighting Blindness.

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