Precision Health

ATLAS Genetic Screening Program

Frequently Asked Questions (FAQ)  

How do I sign up for the ATLAS Genetic Screening Program?

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.

How can I be eligible for this program?

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).

Is there a cost for participating in this program?

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.

What kind of genetic results can I expect to receive?

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.

How will I be notified if a result is found?

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.

What if I chose to receive genetic results through the Universal Consent but no one notifies me?

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.

I did not receive a call from the ATLAS Genetic Screening Program, does this mean I do not have any genetic results that may impact my care?

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.

Why do I need to review an information form before clinical genetic testing?

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.

Why do I need to provide a new biological sample?

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.

How will I meet with a genetic counselor?

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.

What is genetic counseling?

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. 

I had clinical genetic testing in the past, could I learn new information from this program?

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. 

If your clinical genetic test report in your UCLA medical record matches the research result(s), there might not be any new information for us to share. Therefore, we will not contact you since further testing would not be necessary.

If you have any additional questions related to the ATLAS Genetic Screening Program, please email us at [email protected].