Frequently Asked Questions (FAQ)
There is no direct sign-up process available. Participants are enrolled if they chose to receive genetic results that impact their care through the Universal Consent for Biological Samples and have genetic data available in ATLAS. It is important to note that the availability of genomic data is not guaranteed for all collected samples shared with ATLAS.
You can participate in Universal Consent for Biological Samples and donate your leftover biological samples and de-identified health information to ATLAS and other research programs at UCLA. This consent allows researchers to use your biological samples and health data for scientific studies and genetic research.
Participants are eligible if they meet the following criteria:
- Participant has exome sequencing data in the ATLAS database.
- Participant chose to be notified if a genetic result was identified that may impact their care via the Universal Consent form.
- Participant must receive their care in California.
- Participant must have updated contact information in their UCLA medical record.
Eligible participants can participate, regardless of where they currently receive their healthcare (within California).
Genetic counseling is a type of health care service that is typically done by a genetic counselor or health care provider specializing in genetics. Genetic counseling helps families understand and adapt to the medical, psychological, and familial implications of genetic contributions to a specific condition. This may include:
- Reviewing family and medical histories to assess risks.
- Providing education on the genetic condition.
- Counseling families to make informed choices and adapt to the risk or condition
Adapted from the Genetic Counseling Definition Task Force of the National Society of Genetic Counselors.
The cost for the targeted variant test and one genetic counseling appointment are covered by the UCLA Institute for Precision Health. However, if your care team makes medical recommendations based on your clinical result(s) and personal/family history, you and/or your medical insurer will be responsible for all costs of follow up care.
If a medically actionable result is found, a member of the ATLAS Genetic Screening Program will reach out to you. If they are unable to reach you by phone, they will send a MyChart message and/or a letter in the mail.
You will only be notified if researchers find a genetic result that could impact your care. But remember, this is a research program, and it may take several years to screen everyone’s genetic information. We also do not check for all genetic differences (variants). If you are concerned about your genes and how they might affect your health, talk to your primary care provider to decide if a referral to genetics would be appropriate.
Lastly, completing the Universal Consent does not guarantee enrollment in the ATLAS Genetic Screening Program.
In this program, about 2 to 6 out of every 100 participants (2 – 6%) might learn something important about their genes that could impact their health. So, only a few people will get a call from us.
If you don't get a call, it does not mean you do not have genetic variants that may affect your health. We might not find every genetic difference in this program. If you're concerned about your genes and how they might affect your health, talk to your primary care provider to decide if a referral to genetics would be appropriate. They can help decide if you need to see a genetics specialist.
We want everyone taking part in this program to make an informed decision about getting a clinical genetic test. The form will provide a summary of the program and essential details you should know before agreeing to the clinical test. Make sure you read it carefully before making your decision.
The leftover sample that you donated was used for research. To be certain about what we found in research, we need to do a clinical genetic test. This test requires a new sample. We will use the new sample to double-check the research result(s). The test is done in a certified clinical lab, ensuring accurate and reliable results.
We will reach out to you if your results are “medically actionable.” This means there is a genetic difference (called a pathogenic variant) that increases your chances of developing certain types of health issues and screening/treatment may be recommended.
Some people with an increased risk never actually develop the condition. You can find the list of results we report on our website.
The genetic counseling assistant will call participants to schedule a virtual appointment with a genetic counselor. To participate, you'll need a computer, phone, or tablet with a webcam and microphone. It's best to find a quiet, private space for the video appointment (you cannot be driving a vehicle). On the day of the appointment, you will find a link to join the visit in your UCLA MyChart account.
Yes! Genetic tests come in various types. Some focus on specific genes, while others examine all the genes we know about. Also, ongoing genetic research keeps uncovering new details about our genetic differences. Our understanding of genetics is always evolving. Therefore, this program might uncover new information that was not found in a different genetic test.