How will my privacy be protected?
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 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:
a. You or your family voluntarily share information about yourselves.
b. You agree to the specific release of information (for example, the uses described in this form, or if you sign release forms for employment, insurance or medical care).
c.A federal agency audits or evaluates research that it funds.