Genomic Answers for Kids - Information for Patients and Families
Genomic Answers for Kids will collect and store genomic information and biological samples from 30,000 children who may have a genetic condition and their biological family members. This will be a rich resource for researchers studying genetic conditions.
Your child’s participation makes a difference! It could lead to answers and new treatments for children.
We are enrolling children who may have a genetic condition. Many families may have questions about Genomic Answers for Kids, so we’ve provided answers to some of the most common ones here.
What is genomic information? How is it used for research?
Genomic information is the set of information about all our genes and how they are used in our bodies. Genes carry the information that tells our bodies how to grow and work. While we all have differences in our genes that make us unique, some differences can cause genetic diseases.
Genomic Answers for Kids will study the genes of thousands of children to help us understand what genetic differences lead to diseases that affect children. Genomic research can also find ways to treat genetic conditions.
What do I have to do for my child to participate? What does it involve?
- You will talk with a study team member to review and sign the study consent form. Your child may also need to agree to participate.
- Blood will be collected from your child. This may be combined with a blood draw needed for routine care, or it may not be needed if a sample is already available from genetic testing done during routine care at Children’s Mercy.
- Blood or a cheek swab will be collected from biological parents. Siblings may also be asked to participate. If they are younger than 18, you must give consent on their behalf.
- Health information will be collected and stored in secure electronic databases. These are separate from the hospital’s electronic medical record.
In the future, participants may be contacted to request additional information that would be valuable for research, such as lifestyle or medical history information. The samples and data may be studied in multiple ways and stored for future research.
Why are samples needed from family members? Can my child participate without family members having to participate?
Collecting samples from family members is an important part of Genomic Answers for Kids. Being able to compare a child’s genetic makeup to their biological parents’ and siblings’ may help explain the causes of a genetic condition.
A child can still participate even if one or both biological parents are unable to provide a sample or do not want to provide a sample.
Is there a cost to participate? Is participation covered by insurance?
No. There is no cost to the patient or families for participation. Additional tests and procedures that would not have been done in the course of normal care will not be billed to the patient or go through insurance.
In some cases, the necessary tests and procedures will have already been completed in the course of normal care, before joining Genomic Answers for Kids. Patients or insurance will not be compensated for these costs.
Are test results returned to providers or families? When will the results be returned?
If results are found that relate to the child’s current symptoms or reveal an immediate danger to the child’s health, they will be shared with the patient and family, the care team, and genetic counselors. The result will also be placed in the patient’s medical record.
The process may take months or years, as new tests and analyses will be completed over time.
Will participation help my child?
Participating in Genomic Answers for Kids may or may not help diagnose a patient’s condition.
If a diagnosis is made, any treatment will be the responsibility of your child’s doctor and be separate from participation in Genomic Answers for Kids. Participation is not a guarantee that a diagnosis or treatment will be identified, or that a treatment will be successful.
Your child’s genetic information and experience makes future research possible. This could potentially lead to new or improved treatments for children diagnosed with the same condition.
Who would have access to my child’s information and samples?
Our highest priority is protecting the privacy of our patients. Only personnel authorized by the Director of Lab Operations will have direct access to secure storage facilities and samples. Only authorized personnel and approved researchers will have access to personal health information.
All records identifying participants will be kept private and confidential. Identifying information will only be released with the express written permission of the participants or their families or by approval of the Children’s Mercy research review board.
Children’s Mercy researchers and outside researchers may apply for access to patient samples and information under certain conditions.
- They must have an approved research protocol.
- This research can only be for purposes related to pediatric genetic disorders.
- Samples and information provided to researchers may or may not include information identifying the patient.
Data from Genomic Answers for Kids will not be sold.
If you have other questions or want to talk with someone about enrolling in the study, please contact the study team.
Call (816) 915-4200