News - Legislative
Genetic Information Nondiscrimination Act (GINA) Becomes Law
Reprinted from IMPACT - a publication of NTSAD of Delaware Valley
President Bush signed the Genetic Information Nondiscrimination Act (GINA) into law on May 21, 2008. This law is the culmination of a thirteen year effort to enact legislation to prevent the misuse of genetic information.
So, why did it take so long? GINA was seen by many to be premature and unnecessary. Opponents argued that discrimination was not a problem and that the legislation placed an unnecessary burden on employers. Opponents further argued that no suits claiming genetic discrimination had been brought in any states. Forward thinking legislators like Slaughter and Snowe recognized that genetic science was moving forward at a rapid pace and that legislation needed to be in place to protect individuals and ensure that everyone could benefit from these discoveries.
Their predictions became a reality with the mapping of the Human Genome in 2003. This incredible scientific achievement resulted in an explosion of genetic advancements. When legislation was first introduced, genetic testing was not yet commonplace, as it is today. For example, when Tay-Sachs screening first became a reality in 1972, there were only a handful of genetic tests offered. Today, according to the Coalition for Genetic Fairness, there are over 1200 genetic tests available, including screening for Canavan Disease, with many more to come.
Genomic medicine has far reaching potential to help individuals proactively manage their health and the health of their families. This is apparent to every person who has had a child born free of Tay-Sachs or Canavan because of genetic screening. However, the continued development of accurate genetic tests requires scientists to collect genetic information from individuals. Supporters of GINA claim that many people chose not to participate in genetic research due to a fear that their information could cost them their health insurance or job. GINA offers the promise to scientists that they can encourage participation in this vital research without fear of discrimination.
GINA also enables physicians to prescribe the appropriate genetic tests to their patients. Tests for the breast cancer gene (BRCA1/BRCA2) or the colon cancer (HNPCC) gene can save lives. Doctors can use the results of these tests to target
specific treatments and/or suggest lifestyle changes. Each of us has some genetic alteration in our makeup. Some altered genes may pose a health risk to us directly, and some, like the gene for Tay-Sachs or Canavan, may pose a risk to our children. It is vital that this information is protected, so that we are all free to be screened for the appropriate diseases.
GINA is also important in light of the burgeoning direct-to-consumer DNA testing business. In the past few years, several companies have begun to offer personal genome mapping to consumers. A person sends a DNA sample to one of these companies and for a fee can get a report on their own genetic abnormalities. Some states, citing the lack of medical and genetic counseling involved, have started to enact legislation that would regulate these services, but there is no federal law. In addition, several advisory groups, while recognizing that GINA is an important first step, are lobbying for more oversight in the regulation and marketing of genetic testing. While genomic medicine is advancing with great speed, the priority should be that these tests are safe, accurate and reliable.
Here is a quick guide to the Genetic Information Nondiscrimination Act:
What GINA does:
- Prohibits group and individual health insurers from requesting or requiring
genetic testing of an individual and his or her family
- Prohibits group and individual health insurers from using genetic information to
determine eligibility or establish premiums
- Prohibits employers (including employment agencies and labor organizations) from
requesting or requiring genetic testing of an individual or his or her family
- Prohibits employers from using genetic information to make hiring or promotional
decisions, or when determining eligibility for training programs.
What GINA does NOT do:
- Does not prevent heath care providers from recommending genetic tests to their patient
- Does not mandate coverage for any tests or treatments
- Does not prohibit medical underwriting based on current health status
- Does not cover life, disability, or long-term care insurance
- Does not prohibit workplace collection of genetic information for toxic monitoring
programs, employer sponsored wellness programs, administration of federal and state
Family and Medical Leave laws, and in certain cases of inadvertent acquisition of
information. However, the employer may not use or disclose the information.
- Does not apply to members of the military
GINA defines genetic information to include information about: a person’s genetic tests, genetic tests of a family member (up to and including fourth-degree relatives), manifestation of disease or disorder in a family member and participation of a person or family member in research that includes genetic testing, counseling or education. Genetic tests refer to tests that assess genotypes, mutations or chromosomal changes. Protected tests include carrier screening for diseases such as Tay-Sachs and Canavan.
The above information is presented as a broad overview of GINA. Primary resources for this article are the websites of the Genetics and Public Policy Center , the Coalition for Genetic Fairness and the Secretary’s Advisory Committee on Genetics, Health and Society.
Back To Top
Tay-Sachs month declared
In July of 2008, the Senate passed a resolution declaring September 2008 “Tay-Sachs Awareness Month.” In addition, thanks to the efforts of families around the country, more than twenty state legislatures declared “Tay-Sachs Awareness Month” in their states in 2008 (July in NY & NJ).
Back To Top
ANNUAL NATIONAL TAY-SACHS AWARENESS MONTH
Representative Michael Arcuri of New York, husband of PSG Member Sabrina Arcuri (formerly Deon) and US Senator Sherrod Brown (D-OH), have introduced a resolution that would once again officially designate September as National Tay-Sachs Awareness Month! This is a wonderful opportunity to educate high risk ethnic groups, the general population and our legislators about the risks of Tay-Sachs. Please contact of your state Senators and Representative and ask him/her to co-sponsor Senate Resolution #227 and House Resolution 692. Click here to find your Senators’ contact information and click here to find your Representative’s contact information.
Suggested phone or email script:
Senator
I am a registered voter in NAME STATE calling/writing to ask Senator to co-sponsor Senate Resolution #227 to declare September 2009 as Tay-Sachs Awareness Month (S. Res. #227). * Follow rest of script below…
House Representative
I am a registered voter in NAME STATE & DISTRICT calling/writing to ask Representative to co-sponsor House Resolution 692 to declare September 2009 as Tay-Sachs Awareness Month (H. Res.692).
* Tay-Sachs disease is a hereditary, degenerative neurological condition cause by a single gene mutation (Hex A). Today the disease has no cure, no treatment and is always fatal in children.
The populations most at risk for Tay-Sachs disease are Ashkenazi Jews, French Canadian and Louisiana Cajuns – one in 27 carries the gene mutation. In the Irish American population one in 50 people carry the Tay-Sachs mutation and in the overall population one in every 250 people carry the deadly gene mutation. That means 1.5 million Americans carry the Tay-Sachs gene mutation and most of them have never heard of Tay-Sachs disease.
Tay-Sachs disease has three forms: the Classic form that normally kills by age 5; the Juvenile form that kills between ages 10 and 15; and the Late Onset form (LOTS) that can affect adults at any age. The LOTS form is not always fatal, but relentlessly steals functionality.
Please join us in raising awareness for this little known, but very deadly disease.
Back To Top
NIH Awards $3.5 Million Dollar 4-Year Grant to Tay-Sachs Research Team
The Tay-Sachs Gene Therapy (TSGT) Consortium has received official notification from the National Institutes of Health (NIH) - more percisely the National Institute of Neurological Disorders and Stroke - that it has been awarded a 4 year, $3,545,985 research grant!!! The grant period begins September 1, 2009 with a first year distribution of $1,054,908!!!
The Tay-Sachs Gene Therapy Consortium consists of research experts from Massachusetts General Hospital, Auburn University, Boston College, NYU, University of Massachusetts and Cambridge University in England. They are using gene therapy applications to try to halt the progressive neurological degeneration of Tay-Sachs disease. The first year of research produced unbelievable success in small animal models and vector distribution throughout the brain. The second year of research focused on large animal models. There are naturally occuring models in both cat and sheep populations. In year 3 of 4 (depending on success with large animal models) the Consortium will be preparing a clinical trial protocol and seek approval from regulatory agencies in the US (FDA) and UK.
This is a huge step in our battle to find a cure for Tay-Sachs disease, made possible by the many generous donors that have supported us!!! We are blessed to have such a talented group of researchers working on our cause!!! Prior to obtaining this NIH grant, NTSAD’s Research Initiative awarded $577,000 in grant support in the last two years to the Tay-Sachs Gene Therapy Consortium. These funds were critical in advancing the project and enabling the scientific team to apply for the NIH funds. Thousands of people financed this effort through the Cure Tay-Sachs Foundation (CTSF), Cameron & Hayden Lord Foundation, NTSAD New York Chapter, Harry Hoffman Fund, Evan Lee Ungerleider Foundation, Mathew Forbes Romer Foundation and the Sophia Pesotchinsky Fund. This is a huge step in our battle to find treatments and cures for Tay-Sachs disease!
Back To Top
|
