Universal Consent for Biological Samples

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What is the Universal Consent for Biological Samples?

The Universal Consent gives you the opportunity to let us know if you want to share leftover biological samples from your UCLA Health lab tests or treatments to support research. You get to decide by either opting in or out.

If you do opt-in, you will be helping us find answers that could improve care for a wide range of health conditions. All UCLA Health patients are asked to complete the Universal Consent for Biological Samples to let UCLA know how to handle leftover samples for research.

Participation is easy, free, and safe as a confidential, one-time process. 

You can take the next step to drive medical breakthroughs:

  • When possible, take a moment to complete the Universal Consent for Biological Samples online (available to adult patients only) in your preferred language: English, Spanish, Farsi, Mandarin, Korean or Arabic. You will need your UCLA Health medical record number (MRN) to get started and the entire process takes about 8 minutes. 
  • You can also learn about other ways to complete the Universal Consent.
    • Pediatric patients and their parents/legal guardians may only complete the Universal Consent in-person at certain UCLA Health locations. Click here to view a list of participating pediatric locations.

What Does the UCLA Universal Consent for Biological Samples cover?

The Universal Consent for Biological Samples asks that you answer up to three consent questions. You may indicate that you either consent or decline to participate for each question:

  • Can we make your biological samples and associated information available for research? Biological samples include blood, urine, and tissues (such as skin) left over from medical tests, and other needed clinical procedures. Normally these samples are thrown away. If you decline, we will not use them for research. If you do consent, we also collect certain details from your medical record but DO NOT use your name or other identifiers. Under the same set of consent questions, you also have the option to agree to give an extra tube of blood for research during a future clinical blood draw or IV placement. There is no risk to you — you would already be having your blood drawn as part of a standard, scheduled clinical visit.
  • Do you want to hear about other research opportunities? We may come across other ways you can help medical research. These opportunities won’t necessarily be related to your samples. If you consent to be contacted, we may reach out with a call, text message or email.
  • Do you want to receive certain actionable genetic results? The Institute for Precision Health ATLAS Genetic Screening Program analyzes the DNA of the biological samples they receive through the Universal Consent. During research, these results remain connected to the samples but never reveal your identity. DNA analysis may identify genetic changes that can lead to disease and that you can possibly do something about. You can choose to learn about these genetic changes by consenting to the Return of Genetic Results consent option. If you do consent and there is an actionable genetic result found from the use of your samples, a genetic counselor will contact you with more information. If you would like to learn more about the program, you can review the Institute for Precision Health Return of Results Frequently Asked Questions.

Additional Considerations for Those Still Trying to Decide

If you’re still trying to decide whether to participate, consider these points:

  • You can make a difference: The future of medicine depends on building large and diverse research collections of biological samples and health information. If you opt-in, you will be helping researchers better understand a range of diseases and develop new tests and treatments. We’re currently prioritizing samples for our ATLAS Community Health Initiative.
  • Your health care won’t change: Whether you participate or not, your decision won’t affect your relationship with UCLA Health or the services you receive. The only potential impact to you is the possibility of receiving certain genetic results that could affect your health but only if you choose to receive these results.
  • Participation is safe and secure: All research samples are sent to the Biobank, a secure facility at UCLA. Your personal information is not available to researchers. Your samples never include your name or other information that could identify you. Instead, samples are assigned a number for research purposes. Only UCLA-approved researchers will be able to use the samples or associated health information for their studies.

Universal Consent Videos

We have translated the universal consent video into the following languages to ensure that all eligible patients understand the purpose of the consent: SpanishFarsiArabicMandarin Chinese, and Korean.  Your DNA may be the key to unlocking answers and breakthroughs for you and other patients like you.

English

English FAQ

Arabic (العربية)

Arabic (العربية) FAQ

Farsi (فارسی)

Farsi (فارسی) FAQ

Spanish (Español)

Spanish (Español) FAQ

Mandarin Chinese (普通话)

Mandarin Chinese (普通话) FAQ

Korean (한국어)

Korean (한국어) FAQ

For pediatric patients between 7-11 years of age, we have created an informational video to provide them with the purpose of the Universal Consent in a way they can understand. Parents/Legal Guardians can watch it, too!

Pediatric - English

English FAQ

Pediatric - Spanish (Español)

Spanish (Español) FAQ

Adult Patients

Patients over the age of 18 years can complete the Universal Consent in English, Spanish Arabic, Farsi, Mandarin Chinese, or Korean by using any of our consenting methods.

Adult patients can decide to give UCLA permission to collect leftover biological samples, an extra tube of blood or saliva, or they may decline. If you, as an adult patient, decide to give UCLA permission use your leftover biological samples for research but you later change your mind, you may contact the UCLA Biobank at 310-825-4136 to opt-out over the phone. 

Pediatric Patients

Patients under the age of 18 years and their parents/legal guardians can complete the Universal Consent in English and Spanish only at select participating locations by using a provided iPad.

  • For patients under 7 years of age:

Parents/Legal Guardians will watch the adult informed consent video and provide their consent choice on behalf of the patient

  • For patients 7-11 years of age:

Patient will watch an informational video about the Universal Consent, parents/legal guardians will watch the adult informed consent video and provide their consent choice on behalf of the patient

  • For patients 12-17 years of age:

Patient and parents/legal guardians will watch the adult informed consent video and each will provide their consent choice. Please note, patient and parent/legal guardian consent choices must match to move forward in the process.

To Learn More

If you have further questions, please review our frequently asked questions. You can also contact the UCLA Universal Consent team at [email protected] or 310-794-0981.

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