Genetic Testing FAQs
Genetic carrier testing has quickly become more advanced and now routinely offers information on hundreds of diseases. Starting in January 2018, all new donors are being tested for an expanded genetic disease panel, including over 280 diseases. Donors prior to that time also had genetic testing completed, but not as many conditions were tested. The donor’s testing is determined at the time he enters the program and those are the results you see on his donor page under Genetic Testing.
The complete results are available on the donor’s Genetic Testing Summary. You can find this on the individual donor pages as a downloadable PDF from the Genetic Testing link. It lists all the genetic diseases he has been tested for and the results. This can be a helpful document to review with your health care provider before making a final selection.
To find the donors with expanded genetic disease testing, you can sort for them on the Donor Search by going to the 'Advanced Search' tab. Within that tab, there is section called Genetic Testing with the option of ‘Expanded Genetic Disease Panel tested donors’ you can select.
We are all carriers of several genetic disease mutations, only some of which can be tested for with today's technology. As carriers, we are expected to stay healthy. Before having children, if one person is a known carrier of a recessive genetic disease, we ideally want to know the partner’s carrier status for the same disease gene. Two people who are both carriers for the same recessive genetic disease have a 25% chance of an affected child. If both parents are tested negative for the same gene, or if only one is a carrier after both are tested, they are considered to be at low risk.
Many women have already had an expanded panel of genetic conditions tested as part of their pre-pregnancy work–up. Upwards of 70% will find they are a carrier for 1 or more genetic conditions. For clients who are carriers of a genetic condition, this additional testing in our donors means there is likely a suitable match they can select immediately.
Start by looking for a donor from the Expanded Genetic Panel list. You can do this by going the Donor Search and then to the Advanced Search tab and select for this under Genetic Disease Testing. These donors have the most testing available and one is likely to be tested negative for the same condition you are a carrier for and therefore be a suitable match for you. It is important to verify this before a vial purchase. Different genetic testing labs offer slightly different lists of conditions on their panels.
We can likely offer special testing for the at risk condition(s) on your selected donor. Keep in mind that there may be donors on our list already tested negative for that condition(s). The donors with expanded panel genetic testing (see above) may offer you other options.
If you order special testing, results typically take at least 3 weeks to complete and there is an additional fee. We do want you to be able to use the donor once results come back negative, so a vial purchase is required at the time as he might sell out while we wait. If the donor results show that you and the donor are both positive for the same condition, a full refund for the vial(s) you purchased will be offered.
Our genetic counselor is available to help coordinate testing, verify at risk conditions and help you select a suitable donor. Providing a copy of your testing results is helpful to make sure we are testing for the correct conditions in the donor.
We will test donors for the conditions a pregnancy is at risk for, specifically those conditions for which the recipient has been found to be a genetic carrier. We will not test a donor for an entire expanded panel on request. The donor vials have already been used by other recipients, some of whom may be pregnant or have embryos. To present new information to everyone who has already used the donor can be very disruptive. Remember, about 70% of people who have the expanded panel completed are positive for at least one condition. But if there is a medical indication for testing (recipient is a known carrier for a condition the donor has not been tested for) we will likely agree to do the testing for that specific condition.
In addition, if you have had an expanded genetic screening panel completed yourself, then the only important conditions to test the donor for are the ones for which you are positive.
The donor's webpage will have an Acknowledgement of Genetic Risk form which gives specific details about his carrier results. Donors with expanded genetic testing who do not have an Acknowledgement of Genetic Risk form were not positive for any of the genetic diseases tested. His Genetic Testing, a PDF download on the donor's webpage, also gives full details of his genetic testing results.
A donor who is a carrier of a genetic disease can be used successfully to have a healthy child. If you have been tested and your results show you are at reduced risk (negative) for the same disease the donor is a carrier of, then you can consider selecting this donor. If you have not had the testing completed, we recommend you do so before using this donor. Your physician or genetic counselor are good resources to help get any recommended testing completed and answer your questions.
What do I need to do if I want to use a donor who is a carrier?
1. Review the Acknowledgement of Genetic Risk form for the donor you wish to use. The Acknowledgement of Genetic Risk form is available as a downloadable PDF on the donor webpage in the donor search. It is also available as a DocuSign which allows a digital signature.
2. If indicated, consider genetic carrier testing on yourself, where a negative result for the same disease gene reduces risk.
3. When you are ready to move forward, sign and return the Acknowledgement of Genetic Risk form for your selected donor. This must be completed before shipping vials to your clinic.
4. Your clinic will receive a copy of your signed Acknowledgement of Genetic Risk form and a copy of the donor’s Genetic Testing Summary with your vial shipment.
Please call Client Services at 1800-338-8407 for assistance.