There are no physical risks. There is a very small chance that someone could obtain information that would connect the sample to you. Since only you have your unique genetic makeup, information on your ancestry, ethnic group or other people with your disease might be identified and connected with your sample. There is also a small chance that information from your health records could be accidentally released. Currently, only large state and federal agencies have the ability to identify individuals just based on a complete DNA profile. We can’t predict how future technology might affect confidentiality.
Federal and California laws provide certain protections against discrimination based on genetic information.
Some people may have moral, religious or cultural concerns about some kinds of research.
Your samples may be used for a variety of research purposes (e.g., cancer, heart disease, diabetes) and for product development.
Your participation in the UCLA ATLAS Precision Health Biobank is voluntary. If you agree to participate but change your mind, we will honor your request. To make sure you have the time to think over your decision carefully, thre will be a 10-day window from the time you sign the consent to the time your sample becomes available for researchers. Even after the 10-day window, you can still change your mind at any time.
To stop the use of your sample or health information in a study, you may return to the same location where you first completed the consent to change your consent decision. You may also stop the use of your sample or data by contacting the UCLA ATLAS Precision Health Biobank at 310-825-5344.
Any researcher who received your samples will be asked to destroy them. Please note that we cannot get back any samples that have already been used by researchers.
UCLA will remove your name and other information that could identify you before sharing your samples for research. A list of names and matching code numbers will be kept seperate from coded samples and data. Only authorized UCLA staff can access this list. Those working on the research projects will not have access to any information that link your samples to you.
Jane Smith ->becomes -> 1493526807
The samples are kept in locked freezers in locked buildings. All information is kept secure on password protected computers located behind a firewall.
Researchers who study your samples will not know who you are. The UCLA ATLAS Precision Health Biobank will only give them a code number without any identifyinf information. UCLA Health and its UCLA ATLAS Precision Health Biobank must follow state and federal laws and UCLA policies that require protection of your information. The UCLA ATLAS Precision Health Biobank will only give out limited information to other collaborators and none of the information will include identifying information.
The UCLA ATLAS Precision Health Biobank has a Certificate of Confidentiality by the National Institute of Health. This certificate prevents UCLA from sharing any information that could identify you in any civil, criminal, adminstrative, legislative, or other proceeding whether at the federal, state or local level.
Your privacy will always be protected whether you choose to share your leftover sample or donate an additional tube of blood and/or saliva sample for research. If you would like to be contacted for future research, then we may contact you for other research opportunities that may or may not relate to a biological sample you may have given.
Your specimens and information about you are/is protected by a federal Certificate of Confidentiality. This means that we cannot be forced to release your specimens or information about you for any legal proceeding, even if the court asks.
The Certificate allows us to use your specimens and information about you for purposes of this research, or to disclose it for other research when allowed by law. The Certificate requires other researchers to also protect specimens and information we share with them.
There are limits to this protection. The Certificate does not protect your information when:
Any questions related to your rights as a research subject, contact the UCLA Office of the Human Research Protection Program at 310-825-5344.
For general questions or to learn how to navigate the consent application, please call 310-794-0981.
To reach UCLA Precision Health, please call 310-206-6907 or visit uclahealth.org/precision-health.