SSF Urges Passage of the Genetic Information Nondiscrimination Act of 2003

The discovery of the human genome and sequencing of all human genes opens the door to developing potential life-altering therapeutic interventions for millions of Americans who suffer from Sjögren’s syndrome and many other disorders.

Sjögren’s syndrome is a prevalent autoimmune disease that devastates the lives of four million Americans. In Sjögren’s, the immune system damages the moisture-producing glands resulting in classic symptoms of dry eye and dry mouth, which can ravage quality of life and lead to corneal abrasion and ulceration and loss of teeth and inability to chew, swallow and digest food. Sjögren’s can also lead to dysfunction of any body organ or system and is marked by lymphoproliferation, a process that can lead to development of non-Hodgkin's lymphoma. Of all autoimmune diseases, Sjogren's syndrome best illustrates the autoimmunity-lymphoproliferation-lymphoma sequence. Ninety percent of those with Sjogren's are women.

Scientists believe that a combination of genes makes one susceptible to developing Sjögren’s syndrome. For those who are susceptible, an unknown environmental exposure, such as a virus or chemical, is believed to trigger the disease. Several research centers are currently deciphering which genes might be involved, and the National Institutes of Health is launching the first International Registry for Sjögren’s Syndrome – a major effort that will collate genetic information. The answers could bring revolutionary and novel concepts to prevent or manage Sjögren’s syndrome.

Without genetic information protection against potential discrimination by employers and insurance companies, research will be crippled and the critical medical and scientific answers that can help unlock the mysteries of Sjögren’s syndrome will be halted.

The SSF urges passage of Senate bill 1053 to ensure nondiscrimination involving genetic information.