For Patients

A biological sample is any bodily fluid or tissue (e.g., blood, saliva, urine, skin or other tissues) that may be collected when you go to the doctor or have a medical procedure. More often, these samples are collected to help diagnose or monitor your health condition. After being used, anything that's left over is thrown away or destroyed. With your permission, these leftover materials will be sent to the UCLA ATLAS Precision Health Biobank for research instead of being thrown away.

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:

1. You or your family voluntarily share information about yourselves.
2. 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).
3. A federal agency audits or evaluates research that it funds.

We will collect some biological samples from some of your future routine clinical lab work done at any UCLA Health laboratory. With your permission, we may: 1) use leftover biological specimens from any future routine lab work done at any UCLA Health laboratory, 2) collect an extra tube of blood as part of a future blood draw or IV placement during a routine visit, and/or 3) collect saliva if you are at a clinic that collects samples for precision medicine.

*You will not need to undergo any additional needle sticks, tests or procedures.

Your samples may be used for a variety of research purposes (e.g., cancer, heart disease, diabetes) and for product development.

Examples:

• Genetic research
  Your sample may be used to study how genes affect health or respond to treatment. Genes contain pieces of DNA that control how our cells and bodies develop and work. The DNA code is what you inherit from your parents and pass on to your children. Researchers can use a number of methods, including whole genome sequencing, to look at parts or all of your DNA code.
• Scientific databases
  Researchers also put genetic and other non-identifiable information about you and your health conditions, into a research database. This increases knowledge and can make future research discoveries happen more quickly.
• Other uses
  Researchers may use your samples to create new products useful for research or clinical treatment. Your sample may include cells that can be made to grow indefinitely in the laboratory, called a “cell line,” or your sample could be used to develop or test new treatments.