Informed Consent: Education & Conversation Before Participation
Anyone who decides to become part of the Discover Together Biobank must first agree to give their consent. Consent is defined as “agreeing to do something.”
But in research, consent means more than that. We think of it as a process – a combination of education and conversation before you sign on to the study – to make sure that you understand it fully before deciding to participate.
Consent is such an important part of the research process that we have aligned ours with two other leading children’s hospitals: Boston Children’s and Children’s Hospital of Philadelphia. This way, our researchers can collaborate with their experts and coordinate research much faster. This is especially critical in rare disease research, where we may need to combine biobanked samples across several large hospitals to have enough to learn about the disease process or discover treatments.
Education: Understanding What You’re Signing Up For
Before giving your consent to participate in a research study, our Cincinnati Children’s researchers want you to understand:
- The purpose of the research study
- Exactly what you need to do or know about if you participate
- That it is completely voluntary to participate
The differences between research and clinical care
That you or your child may not learn personal results, but your participation is likely to help others in the long run
- Participating or not participating will not impact the care you or your child receives.
- You can withdraw from a study at any time.
Conversation: Talking About Consent & Asking Questions
We welcome your questions. Research is a two-way street – and consent is, too.
For the Discover Together Biobank, if you are interested in participating, you will meet with a study team member who will go over all aspects of the study and make sure you understand everything about the study and your participation before you agree to participate.
You may download the consent document if you want to read it on your own time. Before you agree to participate, it’s important that you talk with a study team member – either in person or over the phone and have all your questions answered − before you sign the document.
What Is Assent?
We like to know that your child understands what they’re participating in as well. If your child is 11 to 17 and is capable of understanding, we also will ask them if they are willing to participate.