On April 25, 2007 the U.S. House of Representatives passed HR 493 to prohibit discrimination on the basis of genetic information with respect to health insurance and employment. The bill was placed on the Senate Legislative Calendar on April 30, 2007. From every indication President Bush is favorable towards this legislation and will sign it into law if it is presented to him. For additional information see below.
We need to live without fear of retribution in the form of genetic discrimination. In the absence of federal legislation, states have implemented a patchwork of laws that shied individuals from employment and insurance discrimination. We need national policy to ensure that all Americans have the same protections. Genetic testing allows individuals to exercise preventive health measures, seek appropriate therapies, and engage in essential life planning. Unfortunately, this same information may be used to discriminate against individuals who have no control over their inherited condition.
How does this impact Alpha-1?
- As a genetic condition, those with Alpha-1 or seeking Alpha-1 testing may face health and employment insurance discrimination. Fear of genetic discrimination may also significantly impact individual and family decision making.
- The Alpha-1 Foundation's Ethical, Legal and Social Implications (ELSI) Working Group has continued to discourage general population screening in absence of protective legislation.
- Those concerned about the ethics of genetic testing have recommended "Targeted Detection" for Alpha-1 for those currently suffering from defined lung disease such as COPD or a family history of Alpha-1.
- The Alpha-1 Coded Testing Trial* has offered individuals an opportunity to receive confidential test results since September 2001. To date, over 2,400 test kits have been requested. Of those returning the test kits and responding to the survey questionnaire,
- Over 30% report fear of losing insurance as the primary reason for seeking confidential testing;
- 34% report concern about facing higher health costs if results were public;
- 85% seek testing for the genetic knowledge. In fact, this was the most popular response to the perceived benefits of seeking testing.
The Alpha-1 Association works to influence legislation designed to protect the public. Legislation has come up in the past and will certainly come up again in the future. Please enroll in our Action Alert! program to get the latest news on how you can help. Click here for the Action Alert!
* The ACT Trial is funded by the Alpha-1 Foundation and conducted at the Medical University of South Carolina under the direction of Dr. Charlie Strange, Program Director. The ACT Trial offers a free and confidential finger-stick test that can be completed at home with results mailed directly to a research study which evaluates perceived risks and benefits of genetic testing. For more information or a test kit please e-mail the registry coordinator at alphaone@musc.edu, or call toll-free at (877) 886-2383.
Click here to see the latest update on Genetic Information Nondiscrimination Act
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