Carrier Screening
Where Can I Get Screened?
For more than 50 years, NTSAD-DV has provided genetic screening, first for Tay-Sachs disease then Canavan and eventually a panel of more than 200 genetic diseases. Access to genetic testing and counseling is at the very core of our mission. In order for us to live our mission more fully, we are thrilled to announce a new partnership that will extend our ability to connect you to reliable testing and counseling through telehealth.
NTSAD-DV is proud to partner with JScreen, a national non-profit offering at-home comprehensive and affordable genetic testing and counseling. In alignment with the mission of NTSAD-DV, JScreen believes that a combination of education, access to state-of-the-art testing technology, and personalized support by qualified medical professionals are key to preventing devastating genetic diseases.
Funded through your generous donations, NTSADV-DV partners with JScreen through a screening fund to access the JScreen ReproGen kit with no out-of-pocket cost when used with insurance. For our members who are uninsured or underinsured, it will cover the full cost of the kit. The JScreen ReproGen test is easy to use and reliable. The panel is appropriate for pan-ethnic testing. American College of Medical Genetics (ACMG) supports extended carrier screening in all populations.
Request the NTSAD-DV coupon code (info@tay-sachs.org)
About JScreen’s ReproGEN test
- Determines risk for having a child with a genetic disease
- Designed for individuals between the ages of 18-45
- At-home, saliva test
- State-of-the-art sequencing technology with highest detection rates
- Low program fee
- Comprehensive panel with 200+ diseases
- Genetic counseling included
Four simple steps to test
01
Complete the secure, online kit request. You will need to include information about your doctor so that JScreen can coordinate a test order on your behalf.
02
Once a valid test order from your doctor is received, JScreen will mail you a saliva collection kit with a pre-paid envelope to send the sample to the lab.
03
Results are typically available within 3 weeks, and a 15–20-minute phone consultation with a genetic counselor is required for most participants.
04
When the entire process is complete, a copy of your results will be emailed to you and sent to your ordering provider. If a person or couples’ risk is elevated, genetic counselors will privately address the results, options, and resources to help plan for a healthy future
(JScreen also offers a second panel of testing to determine cancer risk, CancerGen. This panel is outside the mission of NTSAD-DV; however, you will be able to request this kit which tests for genetic changes that increase risk for many types of cancer.)
Genetic Counseling
The decision to undergo genetic testing is very personal and can have medical and/or emotional consequences. In order to have the best information possible to make the choice that is right for you, it is a good idea to speak with a genetic counselor before undergoing testing.
Genetic counselors are health professionals with specialized graduate degrees. They often work as part of a health care team, educating individuals about genetic disorders, birth defects or the possibilities of these things occurring.
Any individual screened through our Gift of Life Program at the Victor Center for Jewish Genetic Diseases will undergo genetic counseling before screening.
If you would like to find a genetic counselor in your area, please visit the National Society for Genetic Counselors at www.nsgc.org.
Genetic Information Nondiscrimination Act
President Bush signed the Genetic Information Nondiscrimination Act (GINA) into law on May 21, 2008. 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
More information on GINA
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. For more information please visit Genetic Information | HHS.gov or Genetic Discrimination | genome.gov