Biorepositories Core Resource
Universal Consent Registry
During your care at UC Davis Health, doctors may collect blood, urine, or tissue samples for tests. Sometimes, there’s a bit of leftover sample that is normally thrown away. This leftover sample can be very useful to researchers to help improve medical care. We need your permission to use it.
Instead of throwing away these samples, we’re asking you to join the Universal Consent Registry. By joining, you give us permission to use leftover samples and health information for research. Joining is completely your choice, and you can change your mind at any time.
Being part of this Registry will not change your care at UC Davis Health. You will still get the same services and benefits whether you join or not.
Frequently Asked Questions
Using leftover samples and de-identified data from a broad group of patients allows us to study a wide range of health issues. Your participation helps us advance medical knowledge and improve health care.
UC Davis Health does research to find better ways to prevent, diagnose, and treat health problems. Human samples, like blood or tissue, are key to this. By sharing your samples, you help in current and future studies.
Your doctor may order a lab test as part of your care. Sometimes, there will be extra sample material left over. Instead of throwing it away, we can use this leftover sample for research. We may also collect a small amount (1-2 teaspoons) of blood, urine, or saliva during a future visit.
We only use samples left over after your care has been provided. Your identity will be removed from any samples or data used in research. Researchers may use these to study diseases or look for new treatments. Sometimes, samples are stored for future analysis.
No, being in the Registry is voluntary. Your decision won’t affect your care at UC Davis Health.
If you join the Universal Consent Registry, you give UC Davis researchers permission to use your de-identified samples and clinical data. You can withdraw at any time without affecting your medical care.
You can withdraw your consent at any time. If you leave the Registry, your future leftover samples won’t be used. However, we can’t remove data or samples that have already been collected. To withdraw, contact us by mail, phone, or email.
Probably not. Research takes many years, and most results won’t affect your immediate care. But the research could lead to better treatments in the future.
No. There is no charge, and you will not be paid. If the research leads to something of commercial value, it will belong to UC Davis Health.
There are no physical risks to using your samples or data in research. However, there is a small chance that your personal information could be seen by people outside the research team. We take your privacy seriously and will remove your name and any identifying information from the samples and data we use.
Researchers may perform genetic testing on your samples. This involves studying your DNA, which is like a set of instructions for how your body works. DNA guides things like your eye color or how your spine forms. In some cases, researchers may also do whole genome testing, which is like reading your DNA’s entire instruction book.
Even though we use advanced methods to study DNA, your personal privacy is still protected. We are committed to protecting your genetic information at every step.
We have strict rules to protect your personal information. We’ll remove your name and other identifiers and assign a code to your data. The link between your identity and the code is kept separate, and only the research team can access it.
We protect your privacy by:
- Removing your name and identifying information.
- Assigning a code to your sample.
- Keeping the list of names and codes separate from the samples and data.
- Storing all data on secure computers.
- Giving researchers deidentified data only.
State and federal laws protect your privacy and prevent discrimination based on genetic information.
No, the Universal Consent Registry won’t contact you about other studies. If you’re interested in joining other research, contact the Clinical Trials Office at 916-703-9177 or visit https://studypages.com/ucdavis/home/.
For questions about the Registry, contact the Universal Consent Registry manager at 916-734-3475 or email UniversalConsent@ucdavis.edu. For concerns about your rights as a research subject, contact the Institutional Review Board (IRB) at 916-703-9158 or hs-irbeducation@ucdavis.edu.