When UCLA Health receives permission to use biological samples for research, our scientists analyze genes to look for changes. Some genetic changes, or variants, increase the risk of disease. When these variants are identified early, there may be steps you can take to prevent or treat the disease.
As part of the Universal Consent for Biological Samples, you have the opportunity to receive any results that may affect your health and that you can do something about. Participation is optional — you can choose to let researchers use your samples without ever receiving any genetic information.
Please note that some people completed the consent process before we offered our Return of Results program. If you didn’t get a chance to choose before, you can do so by completing the updated consent, as it includes the results option. Learn about the ways to complete the Universal Consent.
What is an “actionable” genetic result?
Following the medical principle of “do no harm,” we notify you of genetic variants only if you can do something about them. We consider variants that are:
- Pathogenic, meaning capable of leading to disease
- Actionable, with established steps to prevent or treat disease should it occur
We expect that only 2% to 3% of samples analyzed will meet both of these requirements. Keep in mind that research can take months or even years to make discoveries that can impact your care.
Researchers aren’t involved in confirming the genetic details and will not learn your identity or further information about your health. The validation and notification process is overseen by the Clinical Genetic Counseling team at the UCLA Institute for Precision Health. The team works with UCLA Health’s Biobank.
How we notify you about genetic research results
We designed our evaluation and notification process to be both transparent and sensitive to your mental and physical well-being. We want to ensure you receive accurate, reliable and useful information, along with the support you need.
Here are the steps we take:
- Once genetic analysis for research is complete, we compare the results to a list of actionable genes. These genes are related to certain diseases, with potential steps you can take to prevent or treat them.
- We double-check to make sure that the results may actually lead to disease. To do this, we need to get a fresh blood or saliva sample from you.
- After we confirm the results, you receive them from a UCLA Health genetic counselor — a trained genetic health professional who is licensed to help. You can speak with the counselor during a video consultation. Discussion topics include the potential impact on your health and on family members. Together, you can create a care plan.
- The results go into your electronic health record and are available in your myUCLAHealth account.
Get more information
If you have further questions, please take a look at our frequently asked questions. You can also contact the Embedded Clinical Research and Innovation Unit (ECRI) at UCLA Health at [email protected] or 310-794-0981.