Can my child and I join the HerediGene Population Study?
Any U.S. resident may participate. Infants, toddlers, and children of all ages may participate in the HerediGene: Children’s Study with written approval of a parent or legal guardian. Children ages seven and older will need to sign a form to participate and receive written approval from a parent or legal guardian. Parents and family members may also consent to join the HerediGene: Population Study.
Is there a cost to participate?
There is no cost to you or your child for participating. The HerediGene: Population Study will cover the cost of the research testing and additional confirmation testing if needed.
Can my child/ I participate at other locations?
Currently, only Primary Children’s Hospital is accepting pediatric samples. Adults may also participate at Primary Children’s as well as the other participating Intermountain locations listed here.
Do I have to participate if my child does?
The study is completely voluntary. No one, including our patients or their family members, is required to participate in this study.
If I choose not to have my child participate, will this impact their level of care?
You can choose not to give permission for your child to take part in the study. If you choose not to participate, your child will still receive quality standard care.
Are there ways to participate without a needle stick/blood draw?
Blood is the only acceptable specimen for the HerediGene: Population Study and the HerediGene: Children’s Study as blood provides the best sample of your DNA for mapping.
Can my child’s sample be collected along with their other ordered labs?
Yes. The goal is to collect the additional two vials of blood for the study at the same time as the labs ordered by your child’s physician for diagnostic testing. Using one “poke,” we can minimize disruption to our youngest patients. If you wish to join the study separately from a physician-ordered blood draw, we will require a draw to obtain the two vials of blood from you or your child.
Can my child participate if they are sick or have a known health condition?
We will enroll children with or without a known or suspected health and/or medical condition. Participation in the HerediGene: Population Study does not replace clinical genetic testing. Also, while study participants can screen negative, that does not mean they are free from the risk of a genetic condition. When participants screen negative, they will not be contacted. Talk to your doctor or genetic counselor if you have a family history of hereditary disease or believe you are at risk for hereditary disease.
Who will have access to my/my child’s healthcare records?
Only Intermountain caregivers and employees from the University of Utah working at Primary Children’s Hospital may access a participant’s personal health information for healthcare or research purposes.
What will Intermountain do with my/my child’s healthcare records?
We will de-identify your and your child’s data for this study so that DNA and healthcare records won’t be associated with you or your child. This de-identified data set is used for research.
Will participation in the HerediGene: Children’s Study help if my child currently has a diagnosis or illness?
We cannot guarantee or promise that your child will receive any benefits from this study. However, if an actionable mutation (or pathogenic variant) is identified in his/her blood that may alter future treatment(s) intended to improve health, you may be contacted. Therefore, there is a potential for short- and long-term benefit with the early detection of a pathogenic variant. We hope the information learned from this study will increase our understanding of precision medicine and improve future treatments in healthcare for all patients.
How long will my child be enrolled in the study?
While there is no planned end date for this study, if your child chooses to leave the study when they are 18 or older, they can submit a written request to Intermountain Precision Genomics. If your child chooses to leave the study as an adult, we will stop collecting information on him/her thereafter, but previously collected blood (and corresponding data) and health information up to withdrawal will be available for this study.
How can my child/I leave the study?
If you or your child decide to stop participating in the study, you can leave at any time. Please refer to the study consent you will receive at the time of enrollment for more information. You can ask us to stop collecting your child’s information by leaving the study, however, we will still be able to use the information and samples we have already collected. You and your child will not be able to join the study again. If you decide to leave the study, your child will still receive the same quality care you would have received without participating in the study.