Genetic Testing

Nearly 80% of all rare diseases have a genetic cause and require Whole Genome Sequencing to produce an actionable diagnosis. The average diagnostic odyssey can last from anywhere from five to seven years. You can imagine the anguish of parents watching their children suffer, watching them endure one test after another. The toll this takes on the family, emotionally and financially, is a great travesty in an age where comprehensive genetic screening available and affordable. Whole Genome Sequencing will alleviate an enormous part of a huge burden these families carry.

Why support the expansion of coverage for Genetic Testing?

• Having an accurate diagnosis can lead to changes in treatment and management of the condition, prevent additional unnecessary testing, and help families find a support structure via other families and organizations.
• Expanding Medicaid to cover Whole Genome Sequencing in all states would provide all families with an actionable, accurate diagnosis, regardless of income.
• Increased genetic testing accelerates the development of effective treatments, as more data is collected on the condition.

What has Genetic Alliance done to support the expansion of coverage for Genetic Testing?

Genetic Alliance wrote to Congress supporting the “Ending the Diagnostic Odyssey Act of 2019.”

How can YOU support the expansion of coverage for Genetic Testing?

Write a letter to your Congressperson supporting the “Ending the Diagnostic Odyssey Act of 2019.” today!

Genetic Alliance's Previous Statements on Genetic Testing

Organizations Sign on to Support bill HR.4144, the "Ending the Diagnostic Odyssey Act of 2019.", October 1, 2019

Sharon Terry Asks Organizations to Sign on to support bill H.R.4144, the “Ending the Diagnostic Odyssey Act.”, September 17, 2019

Genetic Alliance Response to FDA LDT Guidance, February 2, 2015

Sign On Letter for Restoration of Coverage of Laboratory Developed Tests (LDTs) for Military Service Members and Their Families, June 2014

Beast of Burden? Comments on the NIH Genetic Testing Registry, March 2012

Coalition for 21st Century Medicine Responds to the Food and Drug Administration’s Request for Comments regarding “Draft Guidance for Industry and FDA Staff on In Vitro Companion Diagnostic Devices”, October 11, 2011

Sharon Terry Testifies about Increasing Oversight of Laboratory Developed Tests (LDTs), July 28, 2010

Genetic Alliance Asks FDA for Oversight of Advanced Diagnostic Tests and Proposed IVDMIA Guidance, February 2, 2010

Comments to the Secretary's Advisory Committee on Genetics, Health, and Society on Oversight of Genetic Tests, February 11, 2008