Discover Together Biobank | Frequently Asked Questions

Yes, but any outside researcher, whether at an academic institution or private company, must work directly with Cincinnati Children’s researchers. Data may be made available through publication with appropriate safeguards that follow what is written in informed consent, and other local, state and federal protections. We greatly value and support these collaborations – understanding that in many cases, especially rare disease, we would not be able to do the scientific rigor necessary to find causes, diagnoses, therapies and potential cures without our collaborators.

Participating in the Discover Together Biobank is free, and anyone can participate – whether they are healthy or ill, or a pediatric patient or adult. Some families may be asked to participate because their child/children may have a condition or rare disease that we are currently studying – especially if they are receiving clinical testing for that condition. In this case, it is often helpful to have the parents participate as well. Some family members also may be asked to participate because we also need healthy participants in the biobank. We believe it is as important to understand what keeps people healthy as it is to study disease.

Yes. Participation in the Discover Together Biobank is completely voluntary. People can withdraw – or a parent can withdraw a child under 18 – at any time by emailing DiscoverTogetherBiobank@cchmc.org. The participant will be asked if the biobank can continue to use its sample as “deidentified” or to have the sample destroyed. Deidentified means that no one can determine whose sample it is. However, if a sample has already been used, we cannot get that back from researchers who might have used it. In that case, we would destroy the remaining sample.

Discover Together Biobank is the next generation of institutional biobanking efforts at Cincinnati Children’s. Samples from other biobanks are part of Discover Together biobank. Those samples usually were remnants following a blood draw. You may get a call to reconsent that we still can use those samples. The Discover Together Biobank also tries to get a full tube of blood, when possible, from children and adults already getting a blood draw for clinical testing.

Unless someone volunteers and is consented, we usually will not do blood draws only for biobanking purposes. In addition, samples collected for Discover Together Biobank – or previously collected and reconsented under Discover together Biobank – may be used for a wider scope of research important to Cincinnati Children’s.

Giving a sample is not a requirement, but it helps to widen the scope of research that can be conducted at Cincinnati Children’s. Whenever possible, we plan blood draws at the same time as a clinical blood test, so participants aren’t stuck extra times. We can also collect saliva (spit) from participants, too, instead of blood.

It isn’t likely. Some samples may never be used. Others may be used without an easy way to identify the participant. In fact, much of the research that we do at Cincinnati Children’s is either deidentified or uses limited identifiers – needed just to ask a research question. Either way, a research result would need to be verified in a clinical laboratory.

For example, if researchers wanted to study the genetics of asthma, they would be given samples of anyone in the biobank who had an asthma diagnosis. However, they would not know whose sample they had.

If, however, a researcher wanted to study 12-year-old boys with type 1 diabetes, they would know the gender, age and disease status of the person who donated the sample, but not the identity.

In the rare case that a study turns up something medically actionable, meaning the finding suggests a possible disease diagnosis, Cincinnati Children’s would follow its institutional and ethical guidelines to see if the participant should be identified and contacted. If so, it is likely a physician or genetic counselor who is familiar with the family would contact the patient or patient’s parents who then would have the option to learn the results. If they did opt to learn the results, the test would need to be repeated and validated in a clinical laboratory.

Not without your permission. First, research is different from clinical testing. It is unlikely that you will know what tests have been performed with your sample in research or that a researcher would know the identity of the sample.

However, many people who will be asked to donate to the Discover Together Biobank will be having other clinical testing done at the same time, however, and any such clinical testing that their doctor ordered would be part of the medical record.

Genetic and genomic research may lead us to treatments and cures for many diseases. This type of research is critical to understanding health and disease. It gives us a deep dive into cells and genes: how they change and how they work alone or together to create health or illness.

To get a better understanding of the relationship between genetics and genomics, think of a pocket watch.

When you open it, inside are the gears that make it work; think of each gear as an individual gene. The study of individual genes (gears) is genetics.

Now think of how the gears work together, allowing the clock to keep time. That intricate process is a lot like genomics, the study of how all your genes work together.

Learn more at our Family Guide to Genetics & Genomics.

Our samples are exclusively used by Cincinnati Children’s researchers and their collaborators. Research subjects are protected by a number of local, state and federal laws that prevent this from happening, including a National Institutes of Health Certificate of Confidentiality. Learn more.