Frequently Asked Questions

This study is investigating how to help people who have been diagnosed with Hereditary Breast and Ovarian Cancer (HBOC) or Lynch syndrome share their genetic test results with family members, and how to help those family members make informed decisions about their healthcare.

By taking part, you may learn more about your own genetic risk and help your family better understand theirs. Your participation may also help researchers learn how to improve support and access to genetic information for others in the future who face similar risks.

Yes. This study is designed to include both individuals diagnosed with HBOC or Lynch syndrome and their close family members.

If you join the study, your adult first-degree relatives (parents, siblings, or children) who have not had genetic testing may also be able to participate. In some cases, family members who enroll will be placed in the same study group as you.

The study is focused on helping families learn about genetic risk together and understand how to share important health information with one another.

After you enroll in this study, you and any of your family members who enroll are will be sorted (randomized) into one of four groups. You will be in the same group as your family members; however, you do not get to choose what good you are randomized to. Depending on what group you are assigned to, you may receive:

1. Information about genetic testing through a letter.
2. Access to free genetic counseling and testing.
3. Access to the IGNITE-TX educational website.
4. Or a combination of the website and free genetic counseling and testing.

All participants will be sent surveys at the start of the study and at 6- and 12-month follow-up. The surveys are designed to take 15 minutes to complete.

You will receive more information about this study during the informed consent process.

Taking part in this study may help you learn more about your genetic risk for certain types of cancer and what that risk may mean for you and your family. Some participants may also have access to genetic counseling, testing, or educational resources as part of the study. In addition, what researchers learn from this study may help improve support and access to genetic information for others in the future.

There are also some possible risks. Because this study involves collecting personal and health information, there is a small risk of loss of confidentiality, although steps are taken to protect your information. You may also feel worried or anxious when learning about genetic testing results or your risk for cancer.

You will receive more detailed information about potential benefits and risks during the informed consent process before you decide whether to take part.

Yes. This study is designed to be completed entirely remotely. You can participate from home using a computer, tablet, or smartphone.

All study activities—such as surveys, study materials, and even genetic counseling and testing—can be completed online, and you do not need to travel to a clinic or research site to take part.

To enroll in this study, go to the home page and click the “Check my eligibility” button. You will be taken to a secure website where you will complete survey questions to confirm you are eligible. If you have had genetic testing for a hereditary cancer syndrome, have your test results with you when you complete this survey.

You may be eligible if you fall into one of these two groups:

1. You have been diagnosed with HBOC or Lynch syndrome and you have at least one living adult first degree relative (parent, sibling, or child) that who has NOT yet had genetic testing.
   
2. You have a close relative (parent, sibling, or child) who has been diagnosed with HBOC or Lynch Syndrome and you have NOT yet had genetic testing.

All participants must be 18 or older, live in the United States, and have access to the internet.

You may still be able to take part in this study even if you do not have insurance. Participation in the research itself is free.

Depending on the group you are assigned to, you may have access to no-cost genetic counseling and testing. A member of the study team or a patient navigator may also be available to help answer questions about costs, insurance, and options for accessing services.

If you are unsure about coverage or potential costs outside the study, you can also speak with your healthcare provider to better understand your options.

If you choose to take part, you will be asked to complete a some surveys that will be sent to your email or phone. You will be offered a $10 gift card for each survey completed (up to $30).

Also, as part of this study you and your family members who also enroll in this research, will have the chance of receiving education and support regarding genetic testing. Some participants may also receive genetic testing and counseling at no cost, as well as a chance to receive access to the IGNITE-TX educational website.

Participation in this research is free.

No. There is no requirement to get genetic testing in order to participate.

Depending on the group you are assigned to, you may have the opportunity to receive free genetic counseling and testing, but this is never required.

Yes. Taking part in this study is completely voluntary. You can choose to leave the study at any time, for any reason.

If you decide to stop participating, your decision will not affect your medical care or any benefits you are entitled to. The study team can also help answer questions about what happens if you choose to withdraw.

You will receive more detailed information about your rights as a participant during the informed consent process.

This research is being funded by the Foundation for Women’s Cancer.

Your privacy is very important to us. The information you share in this study, including personal health information, will be handled in a secure and confidential way.

Only authorized members of the study team will have access to your information, and it will be stored in secure systems designed to protect your privacy. When possible, your information will be coded or de-identified so that it cannot be directly linked back to you.

Your information may be reviewed by organizations that oversee research studies to make sure the study is conducted properly, but they are also required to protect your privacy.

We follow federal privacy and research regulations, including the Health Insurance Portability and Accountability Act (HIPAA), to help keep your information safe. You will receive more detailed information about how your data is used and protected during the informed consent process.

You can contact the study team via phone 713-792-9155 or email ignitestudy@mdanderson.org. A study team member will respond to you as soon as possible.