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.