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Making that concept a reality has been more complex. Precision medicine is, after all, an entirely new approach to clinical medicine that leverages the power of big data and genomics to transform healthcare.
UCLA’s goals for precision medicine go into the realm of precision health, which encompasses prevention in addition to the diagnosis and treatment of disease.
Precision health will allow scientists and researchers from across virtually all medical disciplines to:
In short, precision health will drive, and define, the future of medicine.
Because building an Institute for Precision Health is essential to this endeavor, that’s what David Geffen School of Medicine at UCLA has done. Daniel Geschwind, MD, PhD, Senior Associate Dean and Associate Vice Chancellor for Precision Medicine leads the Institute for Precision Health.
See Leadership
Geschwind says the "kick-off" project, called “the UCLA AtLAs California Health Initiative,” relies on creation of a community health repository, or biobank. Biobanking refers to the systematic collection and storage of a large number of blood, saliva or tissue "biospecimens" from patients as a resource for later clinical research. Biobanked samples provide a repository of DNA, proteins or mRNAs useful to answer diagnostic or treatment questions well before those questions are even posed, and as such are a cornerstone of research into individualized care.
For the AtLAs community biobank, UCLA will start "modestly" by collecting close to 150,000 blood samples from a representative cross section of UCLA patients, from a variety of clinical laboratories at UCLA over a three-year period. Doing so presents immense organizational challenges, such as recruiting patients, collecting samples, and first and foremost, obtaining informed consent from patients. "Having this resource would allow us to perform whole-genome analysis on patients and connect this to their electronic health record," Geschwind says. If all goes well after three years, the goals ramp up considerably: "Over the long run, and as costs of genetic analyses go down, we would expand this initiative to our entire healthcare system, which consists of close to 5 million patients."
See our most frequently asked questions about the universal consent process and project.
The UCLA BioBank collects biological samples from as many people as possible. It then codes the samples and removes personally identifiable information. The BioBank then sends the samples, along with previously obtained medical records, to qualified researchers who will use the information to find new ways to prevent, detect, and treat health problems.
No. Your decision will have no impact on your clinical care. If you say YES to the additional blood tube, the clinical staff will need to know in order to collect the tube. No matter what your decision is, it will not affect your relationship with UCLA Health or the services you are receiving.
During surgery or clinic visits, biological samples such as blood, urine, skin or other tissues may be collected to help diagnose or monitor your health condition. After being used for your care, leftover materials from the samples are normally discarded or destroyed. Sometimes samples are collected just for research. With your permission, these remaining materials will be sent to the BioBank for research instead of being discarded.
Having an extra tube of blood (up to 2 teaspoons) provides us with enough volume for multiple research purposes and permits certain research not possible on leftover samples.
We will collect any biological samples from future routine clinical lab work done at any UCLA Health System lab. If you give permission, we might:
*You will not need any extra needle sticks, tests or procedures.
There are no physical risks. There is a small chance that someone could obtain information connecting 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 of accidental release of information form your health records. 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.
GINA + California state law prohibit discrimination against you based on genetic information by health, life, and disability insurance companies. Some people may have moral, religious, or cultural concerns about some kinds of research.
Your participation in the UCLA BioBank is voluntary. If you agree to participate but change your mind, we will honor your request. To ensure you have the time to think over your decision carefully, there will be a 10-day window from the time you sign the consent today before your sample could be available for researchers. Even after the 10-day window, you can change your mind.
To stop the use of your sample or data in a study, you may:
Any unused samples will be removed from the BioBank and any researcher who received your samples will be asked to destroy it. Please note that we cannot retrieve materials that have already been used and shared with researchers.
For more information on the UCLA BioBank contact 310-825-4136
For any questions related to your rights as a research subject, contact the Office of the Human Research Protection Program at 310-825-5344
Your samples will be stored indefinitely.
Your samples may be used for a variety of research purposes (e.g., cancer, heart disease, diabetes) and for product development. For example:
Genetic Research Your sample may be used to study how genes affect health or response to treatment. Genes are 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 or your DNA code.
Scientific Databases Researchers also combine genetic and other non-identifiable information about you and your health conditions with information from other research studies to expand the scientific database.
Other Uses Researchers may combine the genetic information they obtain with information from other researchers as this helps make the information even more useful. Your sample may include cells that can be made to grow indefinitely in the laboratory, call a “cell line”.
Only researchers and research projects approved, by a University research review process, may receive samples for their research. Most samples will go to UCLA researchers, but we may also choose to share samples with researchers from other universities, government researchers and researchers from private companies that work on developing new tests or treatments.
You will not get any results back. UCLA will publish a newsletter that provides overall information about new discoveries made from the samples.
You will not be charged or paid for donating your samples. If there is commercial value, it will belong to UCLA and its collaborators. You will not be paid if any new products, test or discoveries result from any research performed with your samples.
Your samples will be used to advance science and better understand specific diseases. In the past, some UCLA samples have developed new treatments for serious diseases. In the future, it may help with providing individualized care that might benefit you.
UCLA will remove your name and other identifying information prior to providing your tissue for research. A list of names and corresponding code numbers will be kept separate from coded samples and data. Only authorized UCLA staff can access this list – those working on the research projects will not have access.
The samples are kept in locked freezers in locked buildings. All data is kept secure on password protected computers located behind a firewall.
Researchers who study your samples will not know who you are. The BioBank will only give them a code number that lacks any identifying information. UCLA Health and its BioBank must follow state and federal laws and UCLA policies that require protection of your information. The BioBank will only release limited information to other parties and none of the information will include identifying information.
The BioBank has a Certificate of Confidentiality by the National Institute of Health. This certificate protects against forced disclosure of personal identifying information in any civil, criminal, administrative, legislative, or other proceeding whether at the federal, state, or local level.
Your privacy will be protected whether you choose to share your leftover sample or give an additional tube for research. If you would like to opt-in 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 many have given.
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