Better Together™ Biobank Frequently Asked Questions
A biobank is a facility that stores samples, like blood, tissue, and saliva, for scientific research. When coupled with a patient’s health information, these samples create a powerful tool to help scientists find patterns and clues to identify, treat, and cure diseases. Biobanks also make certain kinds of research easier. For example, if researchers want to study causes of asthma in children, they can find the samples they need from the Better TogetherTM biobank instead of having to locate and recruit children with asthma to participate in a study.
Pediatric diseases are often rare and have a genetic cause, so by studying samples from a large number of children, researchers have a better chance of identifying these causes and finding new diagnostic tools and treatments. Your child’s sample can also help researchers develop age-appropriate drugs, because children’s bodies sometimes respond differently to therapies designed for adults. And by obtaining samples from our diverse Texas Children’s community, we help ensure that children of different ethnicities are represented in scientific studies.
While your child likely won’t directly benefit from Better TogetherTM Biobank research right now, there may be benefits for your child in the coming years. These include identifying treatable genetic disorders, using genetic information to reduce medication side effects, and linking your child to new clinical trials for which he or she may be eligible. Most importantly, by donating a leftover sample, your child will help scientists develop better treatments and create a healthier future for children everywhere.
Declining to participate won’t affect your child’s care at Texas Children’s in any way.
No extra blood draws, office visits, or tests are required. We only use leftover samples collected as part of your child’s routine clinical care that would otherwise be thrown away. These may include blood, urine, tissues, and other specimens.
Your child’s sample and information will be securely stored and tracked with a random code of numbers and letters (rather than your child’s name, medical record number, or other identifying information) and will only be used for research purposes by Texas Children’s Hospital or our approved research partners. These partners may include researchers at companies developing healthcare products and services.
Your child’s sample and/or health information will only be shared with qualified researchers approved by our members of our governance board. Some approved researchers may work at companies developing healthcare products and services. We will carefully review each such request to make sure that your child’s rights and welfare are protected. Information and data shared with researchers will not contain your child’s name or any other identifying information, and researchers will be given the least amount of information needed to meet their research goals.
Since the purpose of a biobank is to store samples for future use, it’s difficult to predict. For example, your child’s sample might be used to help develop new treatments or to help researchers better understand how diseases are passed on in families. But some samples will never be studied at all.
To better understand your child’s sample, researchers may need basic information such as their age, gender, racial or ethnic group, medical history, or other information. However, before it’s shared with researchers, any information that could identify your child, such as their name or medical record number, will be removed and replaced with a random code of numbers and letters.
You may receive an occasional survey seeking more information about your child or family history, and we may also invite your child to participate in a clinical study. You’re free to opt out of these communications, and declining these requests won’t affect your child’s care.
We store samples in locked freezers in locked buildings and keep health information and research data on secure computers using the highest levels of encryption. Our researchers and collaborators will not be able to access any information that could identify your child. Instead, we will remove your child’s name and any other identifying information from your child’s sample and health record and replace it with a random code of numbers and letters. If information from your child’s sample or health record is shared with researchers, whether within Texas Children’s or with other institutions or entities, it will be similarly “de-identified.”
Only a small number of Texas Children’s researchers will be able to link your child’s sample and information to his or her identity. Typically, they would do so to tell you about a clinical study that could directly benefit your child. They might also contact you in the rare event that a study finds information about your child that suggests a possible disease diagnosis or is otherwise medically relevant. You can choose to opt out of any of these communications.
We’re also in the process of obtaining a Certificate of Confidentiality from the National Institutes of Health, which will further protect patient confidentiality. It will allow us to refuse to disclose information that might identify a patient in a legal or other proceeding, even under a court order or subpoena. There are also a number of federal, state, and local laws that protect research participants from this kind of disclosure.
No. Biobank research isn’t the same as having your child’s sample tested in a clinical laboratory, and researchers studying your child’s sample won’t know their name. Therefore, research findings about your child’s sample won’t be part of your child’s health record and can’t affect your health insurance.
Some Better TogetherTM Biobank samples will never be studied at all, and biobank research isn’t the same as having your child’s sample genetically tested by a clinical laboratory. Therefore, it’s unlikely that you’ll be contacted about your child’s sample. However, if research on your child’s sample reveals genetic information that is medically important, such as a possible disease diagnosis, we may contact you to see if you would like to learn this information. At that time, we’ll share the potential benefits and risks of learning the information and you’ll be free to say “no” to if you don’t wish to learn it.
Better TogetherTM data will not be included in your child’s medical record. This is because biobank research isn’t the same as having samples tested in a clinical laboratory, and researchers studying your child’s sample won’t know their name.
Researchers can learn a lot by studying genes, which are pieces of DNA that give instructions for building the proteins that make our bodies work. DNA stores these instructions in the form of a code that we inherit from our parents and pass on to our children, and genetic sequencing allows researchers to look at some or all of this code. Your child’s sample may be genetically sequenced in whole or in part. Some Better TogetherTM Biobank samples will never be studied at all.
Your child’s sample might be used to develop a cell line, which is a group of cells grown in a lab that can continue to grow and divide indefinitely. Cell lines are a powerful research tool that hold great promise for developing treatments for a wide range of diseases, from cancer to rare genetic disorders. In this way, your child’s sample could help create a healthier world not only for today’s children, but generations to come.
No. Just as you can’t decide who gets your blood if you donate at a blood drive, you won’t be able to direct the use of your child’s sample.
Participation is free and you will not be paid.
Your child’s de-identified sample and health information may have commercial value and/or lead to the development of new drugs or other products that have commercial value. If we receive payments from these materials or products, those funds will be devoted to supporting research and continuing to provide healthcare. You won’t receive any of these payments from us, nor will you receive payments from our external research partners.
A confidentiality breach is always possible, but our procedures make the likelihood of such a breach very small. First, we’ll remove your child’s name and other identifying information from his or her sample and health record before it’s shared with researchers, instead using a random code of numbers and letters to keep track of it. And second, all data is stored on secured, password-protected servers using the highest levels of encryption.
Because your child’s genetic information is unique, there’s also a chance that someone could trace it back to your child. The risk of this happening is very small but may grow in the future as technology advances. However, researchers will always have a duty to protect your privacy and to keep your child’s information confidential.
Yes, you can withdraw your child at any time by emailing bettertogether@texaschildrens.org. We’ll destroy your child’s sample and data from your child’s sample won’t be shared in response to any future research request.
Your child’s sample and information will remain in the Texas Children’s Better TogetherTM biobank indefinitely unless they email us at TCHBiobank@texaschildrens.org and ask to withdraw from the program. In this event, we’ll destroy your child’s sample and data from their sample won’t be shared in response to any future research request.
If you have additional questions or concerns, please email us at TCHBiobank@texaschildrens.org.