Genetic Screening Frequently Asked Questions
SHOULD I GET MYSELF SCREENED?
You should be screened if you are Jewish and single, married, partnered, between 10 and 50 years old, in an interfaith relationship, gay, straight, have children but are planning to expand your family, considering sperm/egg donors, are Ashkenazi, Persian, Sephardic, Mizrachi, or have one Jewish Grandparent.
Regardless of specific Jewish background, all Jewish and interfaith couples should take advantage of OMI's affordable preconception carrier screening.
WHY SHOULD I GET MYSELF SCREENED?
There are certain ethnic groups that have a high concentration of genetic markers which means they are more likely to pass on these conditions to their children. Two-thirds of affected children were from families with no previous history of disease.
The only way to find out if you are at high risk of passing on these diseases is to get screened.
WHAT ARE JEWISH GENETIC DISEASES?
Jewish genetic diseases (JGDs) are a group of severe and often fatal disorders that have a higher carrier rate among people of Jewish ancestry.
1 in 4 Ashkenazi Jews are affected by at least 1 of the 39 diseases we screen for. 1 in 3 Persian/Sephardic/Mizrachi Jews are affected by at least 1 of the 19 diseases we screen for.
WHAT DOES IT MEAN TO BE A CARRIER?
The term “carrier” means that you have an altered copy of a gene in your genetic makeup that can be passed on to your children — who may then develop a certain disease or become carriers themselves. Carriers may show no signs of the disease. Some diseases require a gene change to be inherited from both parents for the disease to occur. In other cases, carriers may show mild symptoms of the disease.
If you feel that you may be suffering from a disease yourself, please do not hesitate to consult with us or your primary care physician for testing and diagnosis!
WHAT IF MY RESULTS COME BACK POSITIVE?
A positive result means we have found that you are a carrier for a particular genetic disease.
If you do test positive, we can help! On behalf of the Open Medicine Institute, you will receive a FREE 15 minute phone consultation from a physician or genetic counselor to discuss your results. We can also help you find a local counselor to help you custom design a treatment plan in the case that you wish to conceive!
WHAT DO I DO IF I TURN OUT TO BE A CARRIER?
First things first: Do not panic. You are unlikely to be affected by the condition as a carrier.
Before having children, you should talk to your partner about getting screened. There are options available for those who screen positive.
Fortunately, in most cases carrier couples are still capable of having healthy children.
WHAT DOES IT MEAN TO PARTICIPATE IN RESEARCH?
When you participate in research, you are helping OMI help your community, and you're also making a huge contribution to the human community at large. You will have control of your data, and OMI will not share your deidentified data with anyone (not even your spouse) without your expressed consent.
The results that we obtain from research help us better understand Jewish genetic diseases and identify additional diseases to screen for. They also allow us to understand a myriad number of other aspects of human interaction.
Join the thousands of individuals who have already contributed to this community driven effort.
I'M HEALTHY. DOES MY CONTRIBUTION TO RESEARCH STILL COUNT?
Of course, the more the merrier! We always welcome healthy controls. Even when you are fully healthy you can serve as a normal control for comparing disease conditions. Having normal controls is essential to performing successful, accurate, high-quality research.
OMI works with various foundations, labs, and academic institutions to advance knowledge for all patients around genetic diseases and other medical conditions.
WHEN WILL I RECEIVE MY RESULTS?
Processing samples while ensuring the highest quality of analysis takes time. Typically, other genetic screening services will deliver your results after 12-15 weeks. OMI guarantees to have your results back to you within 8-12 weeks of your screening date.
HOW WILL I RECEIVE MY RESULTS?
When your results are ready, you will receive a notification via email. You will be able to view your results in your secure and private patient portal on OpenMedNet.You can choose to automatically share your results with your physician.
WHO HAS ACCESS TO MY RESULTS?
Just you — your results are private and confidential!
We recommend you share your screening results with your partner and/or immediate family members. If you test positive as a carrier for a particular disease, your family members may want to get tested as well. Most patients will also share their information with their healthcare providers and OMI.
HOW MUCH WILL GENETIC SCREENING COST ME?
If you participate in early bird registration, the maximum out of pocket cost for you is $50. You will not be required to pay anything more than the fee for registration for these screening services. The tests will be billed to your insurance for up to $3,500 – depending on the conditions screened for. List price for many of these tests is typically over $5,000.
Billing questions can otherwise be referred to screening[at]openmedicineinstitute[dot]org or OMI @ 650-433-8930 x5000.
What's better than knowing your future?
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