Project GENESIS

Frequently Asked Questions

Table of Contents

What is this about?

This study is being conducted by researchers at the University of Utah's Huntsman Cancer Institute and the Children's Oncology Group. It is funded by a grant from the National Institutes of Health and the Damon Runyon Cancer Research Foundation. The study is being done to learn more about the genetics of Ewing sarcoma and we hope that about 550 patients and their parents (or a full sibling) will participate.

What are we being asked to do?

  • We will ask you to provide a saliva sample using a spit container.
  • We will ask you to fill out surveys about your medical and family history.
  • We may ask to sign a form that would allow us to review relevant portions of your medical records.
  • We will provide a pre-paid return envelope for mailing your completed materials to us

Is there any compensation for participating?

As a small token of our appreciation for your time and participation, we will send you a $25 gift card (up to $75 per family).

How much time will it take?

The saliva sample collection will take about 15-20 minutes to complete. The surveys will take about an hour to complete.

What are you going to do with the saliva samples/DNA?

We are asking for a small sample of saliva from both patients and their biological parents/siblings so that we can obtain DNA to look at genes that may be important in the development of Ewing sarcoma. DNA can be used in the fight against cancer by studying whether certain genes are associated with cancer in children.

Who will see the DNA results?

The type of analysis we are doing has no straight-forward clinical or predictive value. Therefore, individual results will be kept confidential and will not be made available to patients, parents, physicians, or insurance companies. However, if the researchers do discover something that could be meaningful in a particular patient's treatment or care, then we will attempt to contact that individual.

Why do you want saliva from both the patient and both parents/a full sibling?

Saliva contains DNA. To understand if parts of DNA or genes are important in cancer, we need to compare the DNA from people with cancer to people without cancer. A good way to do this is to look at DNA from patients with cancer and their parents (and/or one parent and a full sibling) and take note of the similarities and differences. Comparing a patient's DNA to their parents will tell us the most because the DNA is very similar.

Can I receive the results of the study?

We can share overall research findings with you, however in general you will not receive personalized results from analysis done on your sample. We will attempt to notify you if we find genetic or medical information that may be relevant to your/your family member’s clinical care.